Well, I had hoped to provide an update by last night so am a little late but am ready to share a little more tonight. Won't get it all done but will work a little more on catching you all up to date.
Tomorrow I have an appt. with the OB/GYN to discuss the oopherectomy operation and possible removal of my cervix-depending on lab results-risk for cervical cancer. The operation is scheduled for 2/26.
So, you may be wondering what I do with my time these days...
First, I work really hard on being a good mother. Usually my first priority. I spend a lot of time taking care of Alayna and Khaya. I volunteer at least 1 time and often 2 times a week in Alayna's classroom. I practice "Math Facts" with her and her classmates. It is a lot of fun. The children are so funny and I find myself really enjoying my time working with them. I also offer my energy for any assistance the teacher needs.
I also take Alayna to gymnastics and Irish step dance class (although Alayna wants to take a "break" from Irish Step right now to play in the snow). Swimming lessons begin next week.
I spend a lot of time interacting with Khaya. She is at such a fun age. I enjoy making her laugh and smile. She's a sweet baby. Very calm and laid back. I welcome this after 4 months of colic.
I try to go to the gym M-F and need to work on getting there over the w/e. On Mondays and Wednesdays I attend a cancer yoga class. I also do 1/2 hour of cardio. On Tuesday and Thursdays I do 1/2 hour of cardio and then weights/strength training. On Friday I do 45-60 minutes of cardio. I enjoy exercising and know that it can only help me. My dad goes with me to the gym and I will miss him when he goes home.
I am also seeing a counselor on an on-going basis. Darrell and I saw her together when I was first re-diagnosed. This was back in December. We waited until after the holidays to re-connect with her. I went to see her individually last week and Darrell will see her individually this week. We will then see her again together some time this month. We saw her initially when we were in crisis and spiraling with all of the information and decisions we needed to process. Life has settled down significantly and I think we will take advantage of her services as we feel the need.
Darrell needs the computer to do some work (yep..at 10:17 p.m.). So, I will say good night for today.
I hope you all have a great day today!
I will share some more tomorrow.
Peace, joy, happiness, love, laughter, and great health to you all!
Lisa
Monday, February 9, 2009
Saturday, February 7, 2009
Hello All,
A quick update. Tx went well yesterday. I only received Zometa. My original "block" was just returned to NH yesterday. It has to be sent back out to CA to the HERMARK lab to be tested using their technologies. Dr. Shea (oncologist) is hopeful that this testing will shed some light on my true HER2 status. She has held the Herceptin until we determine and decide upon my status. Therefore, instead of presuming I am HER2(+) she is treating me as if I were HER2(-) and holding off on the Herceptin and Tykerb until we definitively know the pathology. Dr. Shea is also going to the annual National Oncology Conference (May) and is going to see if any top name pathologists are interested in taking a look at my "blocks" for research purposes as well as for further information gathering about my "complex" status. Again, will continue to keep you all updated as I receive information.
PET Scan scheduled for 3/5.
CA 27-29 testing will be done this week.
I guess this is all for this post. More to come by tomorrow night.
Hope you all are well, healthy, happy and having a good w/e.
Take Care,
Lisa
A quick update. Tx went well yesterday. I only received Zometa. My original "block" was just returned to NH yesterday. It has to be sent back out to CA to the HERMARK lab to be tested using their technologies. Dr. Shea (oncologist) is hopeful that this testing will shed some light on my true HER2 status. She has held the Herceptin until we determine and decide upon my status. Therefore, instead of presuming I am HER2(+) she is treating me as if I were HER2(-) and holding off on the Herceptin and Tykerb until we definitively know the pathology. Dr. Shea is also going to the annual National Oncology Conference (May) and is going to see if any top name pathologists are interested in taking a look at my "blocks" for research purposes as well as for further information gathering about my "complex" status. Again, will continue to keep you all updated as I receive information.
PET Scan scheduled for 3/5.
CA 27-29 testing will be done this week.
I guess this is all for this post. More to come by tomorrow night.
Hope you all are well, healthy, happy and having a good w/e.
Take Care,
Lisa
Thursday, February 5, 2009
O.K. already....so I have gotten the hint...I am not doing a very good job at keeping this blog up to date...for those of you who know me...if something seems daunting...I tend to put things off until I really need to tackle it...Mor and Dad remind me often-pretty much daily that I should update it...friends have mentioned that maybe I should update it...Darrell jokes that maybe he should send me a comment requesting an update...and Alayna's teacher jokingly mentioned to me today that it has not been updated in quite a while so....for all of you supporters, well wishers, family and friends, I suppose I will attempt an update. I will begin part of it tonight and finish the rest by the end of the w/e.
So, here goes. I am alive, living well, and happy. Have been busy lately it seems.
Alayna is doing great! She is now 7 years old. I can't believe that she is 7 already. Time sure zooms by when you have children. She is having a blast in 1st grade. She has an amazing teacher-not just saying this b/c her teacher reads the blog. Alayna is truly blessed with Mrs. York as her teacher. Alayna also has a great class of classmates. She loves library time, gym class and her gym teacher, art class, recess, and lunch in the cafeteria. Alayna also enjoys riding the bus. Alayna is quite the singer and performer these days. She got a karaoke machine with a microphone from Santa and often belts out songs from High School Musical-which she loves the soundtrack. She also enjoys playing Wii as we bought one for Christmas.
Khaya is also doing great! She is now 7-months-old. She weighed 18.5 pounds at her 6-month check-up. She has 2 teeth. Smiles a lot. Giggles and laughs adorably. She is now eating cereal, fruits, and veggies. She pretty much sleeps through the night with an occasional hiccup. She is almost sitting up. The adoption was final on January 12th, 2009. An interesting fact...Alayna's b-day is January 12th. Therefore, we became official parents on the same day-7 years apart. Pretty cool we think.
Darrell is also doing well. He is working hard on losing weight and getting in shape. He has been going to the gym in the morning (around 6 a.m.) before work. I think he is enjoying it and feels good. He is also getting lots of exercise with his Wii playing. Darrell is also enjoying and busy at work these days. He is working with a mentor (partner) that he really enjoys working with and is learning a lot.
Now about ME! I am so ready for winter and cold weather to be over and for sunny and warmer days to be here. Don't get me wrong...I am not looking for hot, hot, hot but for warmer weather. I do feel blessed that at least the sun has been out and shining despite the cold.
Still very frustrated about the uncertainty of my biomarkers (HER2) status. We still do not have any definitive answers (about 3 months later). My local oncologist/cancer center found my original block and sent it out to CA for FISH testing-only 1 lab in the country conducts this test. The conclusion from this testing is: the DCIS-Ductual Carcinoma In Situ (original dx prior to mastectomy) was HER2(+) (have been informed that about 75% of all DCIS is HER2+) and the invasiveness outside the DCIS was HER2(-). Statistically, only about 25% of all breast cancers are HER2(+). My original block was returned to NH and sent back out to CA-to another lab-for HERMARK testing-again-only one lab conducts this test. We are hoping that this test sheds some light as to my true HER2 status. The HERMARK test is suppose to be more reliable than the FISH. We are hoping to have some answers tomorrow as I have tx. My oncologist shared that my case is "complex" and I might be on an individual medical journey. If pathology and testing is unable to definitively conclude my HER2 status, we will error on the side of caution and treat as if I were HER2(+). This treatment will not harm me if I am truly HER2(-) and will only help me if I am truly HER2(+). I have been and still remain concerned about the validity of the pathology testing and results. I do not want to be ruled out HER2(+) and not receive additional tx if there is a possibility that I might be, despite the pathology testing being inconclusive. If this is not clear, what I am trying to say is, I don't want to be considered
HER2(-) when I might truly be HER2(+) but not receive the tx for HER2 (+). Little anxious about all of this. Will keep you all posted on this status as I receive additional information.
My oncologist waffles about whether she favors my status as HER2(+) vs. HER2(-). Herceptin has leveled the playing field for HER2(+) vs. HER2(-). HER2(+) tends to be more aggressive and tends to spread to other major organs (brain, lungs, and liver). HER2(-) tends to be less aggressive and tends to have a "homing" signal to spread to the bones and stays in the bone (research is not able to identify why this is yet). It appears that HER2(-) might overall be a better prognosis-with a longer life expectancy-statistically that is-I am going to beat all of the statistics (HER2 +/-) though so am not paying attention to them.
Treatment update...
I am still receiving monthly Lupron shots to maintain the chemical menopause.
I am still receiving monthly Zometa infusions.
I am still receiving monthly Herceptin infusions until we determine my HER2 status.
I am still taking daily Arimidex pills.
I am scheduled for an oopherectomy (ovary removal surgery) on 2/26/09. There is also a possibility that I will have to have my cervix taken out as well. We will know the answer to this next week.
I will have my next PET Scan the 1st week of March. This will measure the status of my bone lesions.
I will have my CA 27-29 done in the beginning of March. This will measure my tumor markers to see if the current treatment is working and killing the active cancer/cancer cells.
I will have my 6 month mammogram in March.
I will have CT SCANS of my organs and an MRI of my brain in March.
March will be busy I guess.
This is all for tonight....in my next blog (which will be posted by Sunday night when I go to bed), I will share about: my exercise program (cancer well fit program including yoga), my alternative treatments (acupuncture/orthomolecular medicine/integrative medicine-very interesting), what I have been doing with my time. I know that I have a lot to share as I have not been updating on a weekly basis. Hopefully I will do a better job and not have to share so much in a single entry.
I hope that you are all well, healthy, and happy. I look forward to hearing from you all and welcome comments.
Abby, of course I remember you. You were one of my favorite nurses. How are you? How is your husband and step-children? I hope you are well. My e-mail is dlchichester@yahoo.com if you want to send me a private e-mail.
Please continue to send positive thoughts/energy and prayers. We need all the support we can get!
Take Care,
Lisa
So, here goes. I am alive, living well, and happy. Have been busy lately it seems.
Alayna is doing great! She is now 7 years old. I can't believe that she is 7 already. Time sure zooms by when you have children. She is having a blast in 1st grade. She has an amazing teacher-not just saying this b/c her teacher reads the blog. Alayna is truly blessed with Mrs. York as her teacher. Alayna also has a great class of classmates. She loves library time, gym class and her gym teacher, art class, recess, and lunch in the cafeteria. Alayna also enjoys riding the bus. Alayna is quite the singer and performer these days. She got a karaoke machine with a microphone from Santa and often belts out songs from High School Musical-which she loves the soundtrack. She also enjoys playing Wii as we bought one for Christmas.
Khaya is also doing great! She is now 7-months-old. She weighed 18.5 pounds at her 6-month check-up. She has 2 teeth. Smiles a lot. Giggles and laughs adorably. She is now eating cereal, fruits, and veggies. She pretty much sleeps through the night with an occasional hiccup. She is almost sitting up. The adoption was final on January 12th, 2009. An interesting fact...Alayna's b-day is January 12th. Therefore, we became official parents on the same day-7 years apart. Pretty cool we think.
Darrell is also doing well. He is working hard on losing weight and getting in shape. He has been going to the gym in the morning (around 6 a.m.) before work. I think he is enjoying it and feels good. He is also getting lots of exercise with his Wii playing. Darrell is also enjoying and busy at work these days. He is working with a mentor (partner) that he really enjoys working with and is learning a lot.
Now about ME! I am so ready for winter and cold weather to be over and for sunny and warmer days to be here. Don't get me wrong...I am not looking for hot, hot, hot but for warmer weather. I do feel blessed that at least the sun has been out and shining despite the cold.
Still very frustrated about the uncertainty of my biomarkers (HER2) status. We still do not have any definitive answers (about 3 months later). My local oncologist/cancer center found my original block and sent it out to CA for FISH testing-only 1 lab in the country conducts this test. The conclusion from this testing is: the DCIS-Ductual Carcinoma In Situ (original dx prior to mastectomy) was HER2(+) (have been informed that about 75% of all DCIS is HER2+) and the invasiveness outside the DCIS was HER2(-). Statistically, only about 25% of all breast cancers are HER2(+). My original block was returned to NH and sent back out to CA-to another lab-for HERMARK testing-again-only one lab conducts this test. We are hoping that this test sheds some light as to my true HER2 status. The HERMARK test is suppose to be more reliable than the FISH. We are hoping to have some answers tomorrow as I have tx. My oncologist shared that my case is "complex" and I might be on an individual medical journey. If pathology and testing is unable to definitively conclude my HER2 status, we will error on the side of caution and treat as if I were HER2(+). This treatment will not harm me if I am truly HER2(-) and will only help me if I am truly HER2(+). I have been and still remain concerned about the validity of the pathology testing and results. I do not want to be ruled out HER2(+) and not receive additional tx if there is a possibility that I might be, despite the pathology testing being inconclusive. If this is not clear, what I am trying to say is, I don't want to be considered
HER2(-) when I might truly be HER2(+) but not receive the tx for HER2 (+). Little anxious about all of this. Will keep you all posted on this status as I receive additional information.
My oncologist waffles about whether she favors my status as HER2(+) vs. HER2(-). Herceptin has leveled the playing field for HER2(+) vs. HER2(-). HER2(+) tends to be more aggressive and tends to spread to other major organs (brain, lungs, and liver). HER2(-) tends to be less aggressive and tends to have a "homing" signal to spread to the bones and stays in the bone (research is not able to identify why this is yet). It appears that HER2(-) might overall be a better prognosis-with a longer life expectancy-statistically that is-I am going to beat all of the statistics (HER2 +/-) though so am not paying attention to them.
Treatment update...
I am still receiving monthly Lupron shots to maintain the chemical menopause.
I am still receiving monthly Zometa infusions.
I am still receiving monthly Herceptin infusions until we determine my HER2 status.
I am still taking daily Arimidex pills.
I am scheduled for an oopherectomy (ovary removal surgery) on 2/26/09. There is also a possibility that I will have to have my cervix taken out as well. We will know the answer to this next week.
I will have my next PET Scan the 1st week of March. This will measure the status of my bone lesions.
I will have my CA 27-29 done in the beginning of March. This will measure my tumor markers to see if the current treatment is working and killing the active cancer/cancer cells.
I will have my 6 month mammogram in March.
I will have CT SCANS of my organs and an MRI of my brain in March.
March will be busy I guess.
This is all for tonight....in my next blog (which will be posted by Sunday night when I go to bed), I will share about: my exercise program (cancer well fit program including yoga), my alternative treatments (acupuncture/orthomolecular medicine/integrative medicine-very interesting), what I have been doing with my time. I know that I have a lot to share as I have not been updating on a weekly basis. Hopefully I will do a better job and not have to share so much in a single entry.
I hope that you are all well, healthy, and happy. I look forward to hearing from you all and welcome comments.
Abby, of course I remember you. You were one of my favorite nurses. How are you? How is your husband and step-children? I hope you are well. My e-mail is dlchichester@yahoo.com if you want to send me a private e-mail.
Please continue to send positive thoughts/energy and prayers. We need all the support we can get!
Take Care,
Lisa
Tuesday, January 13, 2009
I understand that some people have had problems posting messages unless they have a Google account. The posting settings have now been revised so that anyone can post. This my test for the settings. The easiest way to do this is to use the Name/URL (you only need to type in your name, leave URL blank) or anonymous profile.
Darrell
Darrell
Tuesday, January 6, 2009
Hello All,
Hope this new blog finds you all well, happy, healthy, and enjoying each and every moment of life.
Again, thank you all for taking the time to read the blog and respond.
So, the next chapter to this saga. Today's blog will share a challenge we have been experiencing.
For those of you who already know this type of information, I am sorry to repeat it. For those who do not...you might find this interesting and learn a little more about the process.
When someone is dx with cancer and all or part of a tumor is removed, it is biopsied. This is done to evaluate the cells involved. It is much more detailed but for the purposes of my entry, this is the most you need to know. When pathologists look at Breast Cancer Cells, they are primarily looking at 3 types of receptors-biomarkers.
1. Her2-An oncogene that, when overexpressed, leads to more cell growth.
2. ER (estrogen)-female sex hormone produced by ovaries, adrenal glands, placenta, and fat.
3. PR (progesterone)-hormone produced by the ovary involved in the normal menstrual
cycle.
When I was initially dx, the pathology on my cancer came back as HER2+ (sort of), ER+, and PR+. Prior to 1995, it was extremely detrimental to be HER2+. In 1995, a breakthrough drug called Herceptin was approved by the FDA and found to be highly effective in treating Her2+ patients. It pretty much leveled if not improved the playing field for those with HER2+ vs. HER2- breast cancer.
When the initial breast cancer was biopsied in 2006 (ICH-stands for Immunohistochemistry), the first initial test came back HER2-, ER/PR+. My oncologist at the time (Dr. Robert) who was originally a pathologist questioned this and sent my specimen for additional evaluations. This was called a FISH. The standard for determining Her2 status based on the fish is, anything less than 1.8 is considered Her2-. Anything over 2.2 is considered Her2+. Anything in between is a "gray/complex" area. Mine came back as 2.0. To be on the safe side (getting Herceptin doesn't hurt me if I am truly HER2- but could drastically help me if Her2+) Dr. Robert considered this Her2+ and treated me as such. ER/PR was not in question.
So, when the cancer came back in the bone, they again performed a biopsy and evaluated the cells/abnormal growth. Apparently biopsy of bone is extremely challenging as the chemicals they use to stain also destroys the bone, making it hard to accurately biopsy. Again, they performed the biopsy using the ICH method. Findings-HER2-, ER-, and PR+. Dr. Shea (local oncologist) questioned the validity of these results and requested a second opinion at Dana Farber. So, we had to request the original "block" of cancer from Virginia as well as send the new bone "block." Unfortunately, Dana Farber was not clear as to what they were being asked to assess. They simply repeated the ICH that was done in both VA & NH. Their findings were Her2-, ER/PR+ (this was consistent with the initial cancer markers). The hope and request was to redo the FISH on the VA-original specimen to check the validity of the Her2 status. Apparently the FISH is a highly specialized test and in most cases is sent to a special lab. I spoke with Dr. Nancy Lin of Dana Farber yesterday to discuss this pathology. She now understands that we were wanting the original specimen to be FISH assessed. She informed me that she would attempt to make arrangements to either send the initial "block" from VA to the special lab or if the "block" has been returned to VA ("tumor" blocks are kept where removed and originally biopsied) request that it be sent out for special FISH testing. Dr. Lin informed me that this process would take about 2 weeks. We were hoping for these results prior to this Thursday (1/8) as I am scheduled for tx. No such luck. They will give me Herceptin but really want to make sure that it is indicated for the next tx. Dr. Lin assured me that this does not change my current course of treatment with the exception that if I am truly Her2-, I would no longer be a candidate for Herceptin or Tykerb (new HER2 drug that passes bld. brain barrier-just approved by FDA in March 2007). Apparently these medications would not contribute to my cancer positively or negatively. I will keep you all posted on what we find out.
The second marker we are assessing, is what as known as CA 27-29. We never evaluated this marker the first time around, and from what I have learned from other individuals in my position, theirs were not tested either. So, CA 27-29 is a specific breast cancer marker. We will be evaluating this marker monthly to evaluate whether the current course of treatment is working. We will evaluate this marker on a monthly basis for the next 3 months. Normal is 38. My initial reading was 188. When I had lab work on 12/26, it rose a little to 208. I discussed this with Dr. Lin. Dr. Lin informed me that it was normal for these numbers to rise before they fall. She also informed me that it usually takes hormonal therapy 2-3 months to begin working. So we will just need to give it some time.
Well, I guess this is all for today. Believe it or not, I still have a little more to share with you all to "catch" you up to date. My hope is by this w/e we will be caught up and able to share during the current time frame.
Take care and I look forward to your responses.
Lisa
Hope this new blog finds you all well, happy, healthy, and enjoying each and every moment of life.
Again, thank you all for taking the time to read the blog and respond.
So, the next chapter to this saga. Today's blog will share a challenge we have been experiencing.
For those of you who already know this type of information, I am sorry to repeat it. For those who do not...you might find this interesting and learn a little more about the process.
When someone is dx with cancer and all or part of a tumor is removed, it is biopsied. This is done to evaluate the cells involved. It is much more detailed but for the purposes of my entry, this is the most you need to know. When pathologists look at Breast Cancer Cells, they are primarily looking at 3 types of receptors-biomarkers.
1. Her2-An oncogene that, when overexpressed, leads to more cell growth.
2. ER (estrogen)-female sex hormone produced by ovaries, adrenal glands, placenta, and fat.
3. PR (progesterone)-hormone produced by the ovary involved in the normal menstrual
cycle.
When I was initially dx, the pathology on my cancer came back as HER2+ (sort of), ER+, and PR+. Prior to 1995, it was extremely detrimental to be HER2+. In 1995, a breakthrough drug called Herceptin was approved by the FDA and found to be highly effective in treating Her2+ patients. It pretty much leveled if not improved the playing field for those with HER2+ vs. HER2- breast cancer.
When the initial breast cancer was biopsied in 2006 (ICH-stands for Immunohistochemistry), the first initial test came back HER2-, ER/PR+. My oncologist at the time (Dr. Robert) who was originally a pathologist questioned this and sent my specimen for additional evaluations. This was called a FISH. The standard for determining Her2 status based on the fish is, anything less than 1.8 is considered Her2-. Anything over 2.2 is considered Her2+. Anything in between is a "gray/complex" area. Mine came back as 2.0. To be on the safe side (getting Herceptin doesn't hurt me if I am truly HER2- but could drastically help me if Her2+) Dr. Robert considered this Her2+ and treated me as such. ER/PR was not in question.
So, when the cancer came back in the bone, they again performed a biopsy and evaluated the cells/abnormal growth. Apparently biopsy of bone is extremely challenging as the chemicals they use to stain also destroys the bone, making it hard to accurately biopsy. Again, they performed the biopsy using the ICH method. Findings-HER2-, ER-, and PR+. Dr. Shea (local oncologist) questioned the validity of these results and requested a second opinion at Dana Farber. So, we had to request the original "block" of cancer from Virginia as well as send the new bone "block." Unfortunately, Dana Farber was not clear as to what they were being asked to assess. They simply repeated the ICH that was done in both VA & NH. Their findings were Her2-, ER/PR+ (this was consistent with the initial cancer markers). The hope and request was to redo the FISH on the VA-original specimen to check the validity of the Her2 status. Apparently the FISH is a highly specialized test and in most cases is sent to a special lab. I spoke with Dr. Nancy Lin of Dana Farber yesterday to discuss this pathology. She now understands that we were wanting the original specimen to be FISH assessed. She informed me that she would attempt to make arrangements to either send the initial "block" from VA to the special lab or if the "block" has been returned to VA ("tumor" blocks are kept where removed and originally biopsied) request that it be sent out for special FISH testing. Dr. Lin informed me that this process would take about 2 weeks. We were hoping for these results prior to this Thursday (1/8) as I am scheduled for tx. No such luck. They will give me Herceptin but really want to make sure that it is indicated for the next tx. Dr. Lin assured me that this does not change my current course of treatment with the exception that if I am truly Her2-, I would no longer be a candidate for Herceptin or Tykerb (new HER2 drug that passes bld. brain barrier-just approved by FDA in March 2007). Apparently these medications would not contribute to my cancer positively or negatively. I will keep you all posted on what we find out.
The second marker we are assessing, is what as known as CA 27-29. We never evaluated this marker the first time around, and from what I have learned from other individuals in my position, theirs were not tested either. So, CA 27-29 is a specific breast cancer marker. We will be evaluating this marker monthly to evaluate whether the current course of treatment is working. We will evaluate this marker on a monthly basis for the next 3 months. Normal is 38. My initial reading was 188. When I had lab work on 12/26, it rose a little to 208. I discussed this with Dr. Lin. Dr. Lin informed me that it was normal for these numbers to rise before they fall. She also informed me that it usually takes hormonal therapy 2-3 months to begin working. So we will just need to give it some time.
Well, I guess this is all for today. Believe it or not, I still have a little more to share with you all to "catch" you up to date. My hope is by this w/e we will be caught up and able to share during the current time frame.
Take care and I look forward to your responses.
Lisa
Sunday, January 4, 2009
Happy Sunday!
First of all...thank you all for taking the time to read my blogs and to respond. I check the blog daily and enjoy reading your comments and getting your questions. My goal is to catch you all up to date and then update the blog 2 x week if I have news to share and 1 x a week if it is a slow week.
Have a favor to ask one of you who have posted a comment. Could someone please provide instructions on how to post a comment for other readers. We have received feedback that people are able to read it but unable or are unsure as to how to post a comment. Instructions would be appreciated for those who would like to post but need directions. Thank you in advance.
Yesterday was a nice dose of normalacy for us. Alayna had a playdate with her two good twin friends (Lily and Abby). Fun day/evening of playing in the snow, eating, watching a movie, and singing and dancing around. Lily and Abby's parents (Patty and Marty) are our friends and offered for this playdate. Was great for Alayna and for us as well. Darrell and I went out to dinner with our neighbor friends (Rebecca and Dan) and had a really nice time. We ate at a local restaurant-11 Water Street. Rebecca's mother-Lois (our friend too) watched their child (Benjamin) and Khaya. Felt really nice to do normal everyday things.
To answer your questions Uncle Frank and Aunt Pat...
1. I do have the Bernie Seigel book-have not read it yet. I do not have the China Study Book.
2. I am participating in the Cancer Well Fit program here at the local hospital which has a really nice gym connected to it. I am able to participate in this program free of charge as long as I am in active tx. I will participate in yoga (2 times a week). I will swim at least 1 x week. I will do strength training 3 x week. I will also do cardiovascular exercises at least 3-4 times a week. Research shows that exercise helps with fatigue and overall well being while in tx so I will begin this exercising this week. I will take Dad with me so that he can exercise also.
3. There is a metastatic breast cancer support group in Manchester, NH. About 45 min.-1 hour away. There are also support groups down in Boston. I think they meet about 1 x a month. Attending one is on my list. Darrell and I are going to a therapist together. We began prior to the holiday season and will resume once life settles back down. I think we will probably go every 2-3 weeks.
4. Hysterectomy. I am hoping to have it done vaginally also. The recovery period is said to be less intense. I am calling my OB/GYN this week to discuss the procedure with her as well as to schedule it. Will keep you posted on what she shares.
5. Meditating. I am awful at visualizations. Terrible. I try hard but am so a Type A personality that I find it challenging. I am working really hard at it with Mor. I try not to fall asleep while she is talking. I need to find something tangible to imagine and maybe it will work better for me. It is a "work in progress." We were doing it everyday. Holidays challenged our schedule but we will get back to it this week.
6. I am also going to begin taking piano lessons this week from Mor. Have wanted to take lessons for several years and now going to. We were given a free piano but need to get it tuned. Will also work on that this week.
Well, I think that I have answered your questions for this post.
I will work on continuing my update of the treatment and issues going on right now. I will update some more either tonight or tomorrow.
I hope you all have a great day!
Lisa
First of all...thank you all for taking the time to read my blogs and to respond. I check the blog daily and enjoy reading your comments and getting your questions. My goal is to catch you all up to date and then update the blog 2 x week if I have news to share and 1 x a week if it is a slow week.
Have a favor to ask one of you who have posted a comment. Could someone please provide instructions on how to post a comment for other readers. We have received feedback that people are able to read it but unable or are unsure as to how to post a comment. Instructions would be appreciated for those who would like to post but need directions. Thank you in advance.
Yesterday was a nice dose of normalacy for us. Alayna had a playdate with her two good twin friends (Lily and Abby). Fun day/evening of playing in the snow, eating, watching a movie, and singing and dancing around. Lily and Abby's parents (Patty and Marty) are our friends and offered for this playdate. Was great for Alayna and for us as well. Darrell and I went out to dinner with our neighbor friends (Rebecca and Dan) and had a really nice time. We ate at a local restaurant-11 Water Street. Rebecca's mother-Lois (our friend too) watched their child (Benjamin) and Khaya. Felt really nice to do normal everyday things.
To answer your questions Uncle Frank and Aunt Pat...
1. I do have the Bernie Seigel book-have not read it yet. I do not have the China Study Book.
2. I am participating in the Cancer Well Fit program here at the local hospital which has a really nice gym connected to it. I am able to participate in this program free of charge as long as I am in active tx. I will participate in yoga (2 times a week). I will swim at least 1 x week. I will do strength training 3 x week. I will also do cardiovascular exercises at least 3-4 times a week. Research shows that exercise helps with fatigue and overall well being while in tx so I will begin this exercising this week. I will take Dad with me so that he can exercise also.
3. There is a metastatic breast cancer support group in Manchester, NH. About 45 min.-1 hour away. There are also support groups down in Boston. I think they meet about 1 x a month. Attending one is on my list. Darrell and I are going to a therapist together. We began prior to the holiday season and will resume once life settles back down. I think we will probably go every 2-3 weeks.
4. Hysterectomy. I am hoping to have it done vaginally also. The recovery period is said to be less intense. I am calling my OB/GYN this week to discuss the procedure with her as well as to schedule it. Will keep you posted on what she shares.
5. Meditating. I am awful at visualizations. Terrible. I try hard but am so a Type A personality that I find it challenging. I am working really hard at it with Mor. I try not to fall asleep while she is talking. I need to find something tangible to imagine and maybe it will work better for me. It is a "work in progress." We were doing it everyday. Holidays challenged our schedule but we will get back to it this week.
6. I am also going to begin taking piano lessons this week from Mor. Have wanted to take lessons for several years and now going to. We were given a free piano but need to get it tuned. Will also work on that this week.
Well, I think that I have answered your questions for this post.
I will work on continuing my update of the treatment and issues going on right now. I will update some more either tonight or tomorrow.
I hope you all have a great day!
Lisa
Friday, January 2, 2009
Happy New Year!
Hope this blog finds you all well, happy, rested, and looking forward to a great year-full of possibilities!
Darrell, Alayna, Khaya, Alayna's friend-Ann, and myself all celebrated together. We had a nice evening at home. We played games, ate fun foods, and watched the ball drop. Finally got the girls to sleep around 1 a.m. Made for a long evening...but fun!
Picking up where I left off. Darrell and I went to see the orthopedic surgeon-Dr. Peter Dirksmeier on Friday, October 31st. We reviewed the Lumbar MRI with Dr. Dirksmeier, who informed us that he was pretty convinced that the abnormality he saw was cancer. During our appt., we discussed the biopsy procedure and a Kyphoplasty.
Kyphoplasty is a procedure where the original height and angle of a fractured vertebra are restored, followed by its stabilization using injected bone filler material-cement for me.
Kyphoplasty is designed to stop the pain caused by the bone fracture, to stabilize the bone, and to restore some or all of the lost vertebral body height due to the compression fracture.
Balloon kyphoplasty has been shown to benefit patients with osteoporotic or cancer-induced VCF.
On November 12th I underwent the biopsy and Kyphoplasty. Both were a success and after one night in the hospital, I was able to return home. I can't really say that the Kyphoplasty has improved the pain and discomfort I have felt as I still experience both. As predicted, the biopsy came back as breast cancer metastases.
When tumor cells metastasize, the new tumor is called a secondary or metastatic tumor, and its cells are like those in the original tumor. This means, for example, that, if breast cancer metastasizes to the bone, the secondary tumor is made up of abnormal breast cells, not of abnormal bone cells. The tumor in the bone is then called metastatic breast cancer, not bone cancer.
Once the biopsy was completed and confirmed, we met with Dr. Shea (oncologist) and Dr. Nixon (radiation oncologist). We also decided to seek additional opinions/recommendations from Dartmouth Hitchcock Medical Center (DHMC)-Norris Cotton Cancer Center-Dr. Kaufman (11/22), and Dana Farber Cancer Institute in Boston-Dr. Nancy Lin (12/1-would NEVER, NEVER recommend going to a national cancer institute on your birthday by the way-appt. was scheduled for me-I would not have done this to myself). Both of course offered differing treatment recommendations. DHMC offered a blind/random trial and Dana Farber offered a standard treatment that has shown to be primarily successful in the past. At this time, we don't feel comfortable with a blind/random trial as we are not guaranteed that I would receive the drug being trialed. I also contacted Dr. Robert (amazing oncolgist and person) who was my first oncologist down in Virginia when I was originally diagnosed. He is a leading breast cancer oncologist nationally. He agreed with Dana Farber's course of tx.
Unknown to us as well as all of the medical providers included at this point, the metastases were also found in four additional locations. The locations are: left femur, right scapula, right pelvis, and right first rib. These additional metastases were found via a PET scan, which was done on 12/3.
So, are you wondering what the course of initial treatment is? I won't leave you wondering. Several steps in this first initial round of tx.
In case you are wondering...I picked up several shortcuts for charting when working in the hospital system and tend to use them out of habit. Here they are for those of you who are wondering what I am trying to say:
TX=treatment
DX=diagnosis
W/E= weekend
Appt.= appointment
If I post others and you don't know what they mean, feel free to ask.
So, treatment:
1. Chemical menopause to see if my body can handle it. This is done with a shot once a month called Lupron. If this is successful, I will have a complete hysterectomy in Feb. or March of 2009. Lab tests on 12/26 indicate that I am not in menopause yet but I have been experiencing hot flashes. Pretty similar to the hot flashes I experienced with the first round of chemo and tamoxifen.
2. Once in menopause, I will transition from Tamoxifen-drug I have been taking since March 2007 to a new drug for post menopausal women called ARIMIDEX. Daily pill. ARIMIDEX works by lowering the amount of the hormone estrogen in the body. Estrogen is a very very bad hormone in my body! Hence...cancer.
3. Zometa. Monthly infusion. ZOMETA works by: Slowing the bone–destroying activity that occurs with bone metastases. Fighting the abnormal cells that cause bone to wear away (osteolytic lesion). Bone metastases wear away portions of bone‚ leaving small holes called osteolytic bone lesions. This wearing away process causes eroded bone to appear as circular‚ punched out areas. It leaves bones weak and fragile. Slowing the abnormal buildup of unstable bone (osteoblastic lesion) Bone metastases can also cause abnormal bone formation. Areas of new bone form‚ but they are weak and unstable and can break easily or collapse. These areas are called osteoblastic bone lesions ZOMETA helps protect your bones ZOMETA reduces the risk of bone complications such as bone fracture‚ hypercalcemia of malignancy‚ and spinal cord compression. ZOMETA helps restore the normal process of bone remodeling‚ thus reducing the chance of bone complications. Even patients who have already had complications‚ such as bone fracture‚ radiation‚ or bone surgery‚ can be helped by treatment with ZOMETA. In these cases‚ ZOMETA may reduce the risk of additional complications.
4. Herceptin. Infusion every 3 weeks. Also known as Trastuzumab is a cancer medication. It interferes with the growth of cancer cells and slows their growth and spread in your body.
Trastuzumab is used to treat breast cancer that has progressed after treatment with other chemotherapy.
5. Tykerb. Oral. Take a number of pills per day. TYKERB is indicated in combination with Xeloda® (capecitabine) for the treatment of patients with advanced or metastatic breast cancer whose tumors overexpress HER2 and who have received prior therapy including an anthracycline, a taxane, and Herceptin® (trastuzumab). TYKERB is an advance in one of the most exciting areas of breast cancer treatment research—targeted therapies. TYKERB targets breast cancer cells that have too many HER2 receptors. HER2 receptors are one of many receptors in a cell. HER2 receptors join together, causing enzymes called tyrosine kinases to become active. This signals cancer cells to divide and grow.3 Between 20% and 25% of breast cancers produce too much HER2 and are classified as HER2+ (HER2 positive). HER2+ tumors grow more quickly than tumors with lesser amounts of HER2.4 HER2 receptors appear on both the outside and inside of the cell.3 TYKERB is a small-molecule medicine; its small size allows TYKERB to go inside the cell and help block the HER2 signal pathway. This is a different way to stop or slow cancer cell growth. Blocking the HER2 signal pathway may prevent cancer cells from growing, dividing and surviving.1Tykerb was just FDA approved in 2007. It differs from Herceptin in that in passes the blood brain barrier and Herceptin does not.
6. Stereotactic Radio Surgery. Highly specialized radiation treatment. Equivalent to 30 daily treatments in one single treatment. Had this radiation procedure on 12/11/08. Stereotactic radiosurgery is a radiation therapy technique for treating brain tumors and bone lesions without surgery. A full body frame is used to help aim high-dose radiation beams directly at the tumors and not at normal brain tissue. One stereotactic radiosurgery technique is called a gamma knife.
Gamma knife surgery, a form of medical technology used to treat people with neurological disorders, was developed in Sweden in 1967. It has gradually gained acceptance and become more widely available in the past 20 years, and has been used to treat 70,000 to 80,000 individuals to date. The gamma knife is not actually a "knife," in the sense of a surgical blade. It is a method of administering high-dose radiation with surgical precision to a very specific area of tissue within the cranial region while affecting an extremely small volume of surrounding healthy tissue. Gamma knife surgery delivers a beam of gamma radiation (photon particles) from 201 distinct Cobalt 60 sources . The individual beams do not harm healthy tissue as they travel through, but as they arrive at the abnormal target tissue, the concentration of all 201 beams has the capacity to destroy that tissue's ability to survive. I will have a MRI in Feb. 2009 to see if this procedure was successful.
Well, this is all for today! There are more chapters to this saga...I can only share so much at one time.
Please feel fee to respond!
Thinking of you all and wishing you a great beginning to 2009!
Lisa
Hope this blog finds you all well, happy, rested, and looking forward to a great year-full of possibilities!
Darrell, Alayna, Khaya, Alayna's friend-Ann, and myself all celebrated together. We had a nice evening at home. We played games, ate fun foods, and watched the ball drop. Finally got the girls to sleep around 1 a.m. Made for a long evening...but fun!
Picking up where I left off. Darrell and I went to see the orthopedic surgeon-Dr. Peter Dirksmeier on Friday, October 31st. We reviewed the Lumbar MRI with Dr. Dirksmeier, who informed us that he was pretty convinced that the abnormality he saw was cancer. During our appt., we discussed the biopsy procedure and a Kyphoplasty.
Kyphoplasty is a procedure where the original height and angle of a fractured vertebra are restored, followed by its stabilization using injected bone filler material-cement for me.
Kyphoplasty is designed to stop the pain caused by the bone fracture, to stabilize the bone, and to restore some or all of the lost vertebral body height due to the compression fracture.
Balloon kyphoplasty has been shown to benefit patients with osteoporotic or cancer-induced VCF.
On November 12th I underwent the biopsy and Kyphoplasty. Both were a success and after one night in the hospital, I was able to return home. I can't really say that the Kyphoplasty has improved the pain and discomfort I have felt as I still experience both. As predicted, the biopsy came back as breast cancer metastases.
When tumor cells metastasize, the new tumor is called a secondary or metastatic tumor, and its cells are like those in the original tumor. This means, for example, that, if breast cancer metastasizes to the bone, the secondary tumor is made up of abnormal breast cells, not of abnormal bone cells. The tumor in the bone is then called metastatic breast cancer, not bone cancer.
Once the biopsy was completed and confirmed, we met with Dr. Shea (oncologist) and Dr. Nixon (radiation oncologist). We also decided to seek additional opinions/recommendations from Dartmouth Hitchcock Medical Center (DHMC)-Norris Cotton Cancer Center-Dr. Kaufman (11/22), and Dana Farber Cancer Institute in Boston-Dr. Nancy Lin (12/1-would NEVER, NEVER recommend going to a national cancer institute on your birthday by the way-appt. was scheduled for me-I would not have done this to myself). Both of course offered differing treatment recommendations. DHMC offered a blind/random trial and Dana Farber offered a standard treatment that has shown to be primarily successful in the past. At this time, we don't feel comfortable with a blind/random trial as we are not guaranteed that I would receive the drug being trialed. I also contacted Dr. Robert (amazing oncolgist and person) who was my first oncologist down in Virginia when I was originally diagnosed. He is a leading breast cancer oncologist nationally. He agreed with Dana Farber's course of tx.
Unknown to us as well as all of the medical providers included at this point, the metastases were also found in four additional locations. The locations are: left femur, right scapula, right pelvis, and right first rib. These additional metastases were found via a PET scan, which was done on 12/3.
So, are you wondering what the course of initial treatment is? I won't leave you wondering. Several steps in this first initial round of tx.
In case you are wondering...I picked up several shortcuts for charting when working in the hospital system and tend to use them out of habit. Here they are for those of you who are wondering what I am trying to say:
TX=treatment
DX=diagnosis
W/E= weekend
Appt.= appointment
If I post others and you don't know what they mean, feel free to ask.
So, treatment:
1. Chemical menopause to see if my body can handle it. This is done with a shot once a month called Lupron. If this is successful, I will have a complete hysterectomy in Feb. or March of 2009. Lab tests on 12/26 indicate that I am not in menopause yet but I have been experiencing hot flashes. Pretty similar to the hot flashes I experienced with the first round of chemo and tamoxifen.
2. Once in menopause, I will transition from Tamoxifen-drug I have been taking since March 2007 to a new drug for post menopausal women called ARIMIDEX. Daily pill. ARIMIDEX works by lowering the amount of the hormone estrogen in the body. Estrogen is a very very bad hormone in my body! Hence...cancer.
3. Zometa. Monthly infusion. ZOMETA works by: Slowing the bone–destroying activity that occurs with bone metastases. Fighting the abnormal cells that cause bone to wear away (osteolytic lesion). Bone metastases wear away portions of bone‚ leaving small holes called osteolytic bone lesions. This wearing away process causes eroded bone to appear as circular‚ punched out areas. It leaves bones weak and fragile. Slowing the abnormal buildup of unstable bone (osteoblastic lesion) Bone metastases can also cause abnormal bone formation. Areas of new bone form‚ but they are weak and unstable and can break easily or collapse. These areas are called osteoblastic bone lesions ZOMETA helps protect your bones ZOMETA reduces the risk of bone complications such as bone fracture‚ hypercalcemia of malignancy‚ and spinal cord compression. ZOMETA helps restore the normal process of bone remodeling‚ thus reducing the chance of bone complications. Even patients who have already had complications‚ such as bone fracture‚ radiation‚ or bone surgery‚ can be helped by treatment with ZOMETA. In these cases‚ ZOMETA may reduce the risk of additional complications.
4. Herceptin. Infusion every 3 weeks. Also known as Trastuzumab is a cancer medication. It interferes with the growth of cancer cells and slows their growth and spread in your body.
Trastuzumab is used to treat breast cancer that has progressed after treatment with other chemotherapy.
5. Tykerb. Oral. Take a number of pills per day. TYKERB is indicated in combination with Xeloda® (capecitabine) for the treatment of patients with advanced or metastatic breast cancer whose tumors overexpress HER2 and who have received prior therapy including an anthracycline, a taxane, and Herceptin® (trastuzumab). TYKERB is an advance in one of the most exciting areas of breast cancer treatment research—targeted therapies. TYKERB targets breast cancer cells that have too many HER2 receptors. HER2 receptors are one of many receptors in a cell. HER2 receptors join together, causing enzymes called tyrosine kinases to become active. This signals cancer cells to divide and grow.3 Between 20% and 25% of breast cancers produce too much HER2 and are classified as HER2+ (HER2 positive). HER2+ tumors grow more quickly than tumors with lesser amounts of HER2.4 HER2 receptors appear on both the outside and inside of the cell.3 TYKERB is a small-molecule medicine; its small size allows TYKERB to go inside the cell and help block the HER2 signal pathway. This is a different way to stop or slow cancer cell growth. Blocking the HER2 signal pathway may prevent cancer cells from growing, dividing and surviving.1Tykerb was just FDA approved in 2007. It differs from Herceptin in that in passes the blood brain barrier and Herceptin does not.
6. Stereotactic Radio Surgery. Highly specialized radiation treatment. Equivalent to 30 daily treatments in one single treatment. Had this radiation procedure on 12/11/08. Stereotactic radiosurgery is a radiation therapy technique for treating brain tumors and bone lesions without surgery. A full body frame is used to help aim high-dose radiation beams directly at the tumors and not at normal brain tissue. One stereotactic radiosurgery technique is called a gamma knife.
Gamma knife surgery, a form of medical technology used to treat people with neurological disorders, was developed in Sweden in 1967. It has gradually gained acceptance and become more widely available in the past 20 years, and has been used to treat 70,000 to 80,000 individuals to date. The gamma knife is not actually a "knife," in the sense of a surgical blade. It is a method of administering high-dose radiation with surgical precision to a very specific area of tissue within the cranial region while affecting an extremely small volume of surrounding healthy tissue. Gamma knife surgery delivers a beam of gamma radiation (photon particles) from 201 distinct Cobalt 60 sources . The individual beams do not harm healthy tissue as they travel through, but as they arrive at the abnormal target tissue, the concentration of all 201 beams has the capacity to destroy that tissue's ability to survive. I will have a MRI in Feb. 2009 to see if this procedure was successful.
Well, this is all for today! There are more chapters to this saga...I can only share so much at one time.
Please feel fee to respond!
Thinking of you all and wishing you a great beginning to 2009!
Lisa
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