MY IVF Breast Cancer Diary

Hello. I hope everyone is enjoying the summer. I have certainly appreciated the break that Dr. Hollister gave me. I had a great vacation in Chicago where I went out almost EVERY NIGHT!!! A week later in Rye I am FINALLY feeling more like myself for the first time in many months. Instead of dreading radiation, on the contrary, I am ready to get going and put it behind me.

I begin radiation tomorrow at 6pm which will dramatically upset the house schedule. Hopefully the time will change within a few weeks to 9am. I will have radiation Monday through Friday daily for 7 weeks (assuming no complications). I am going to a center less than a ten minute drive from the house that has a new radiation machine. Treatment with the new machine takes much longer. I will be in the machine for approximately 25 minutes daily instead of 5-7 with the old machine but it will target the precise areas more effectively. All in all, I should be in and out within an hour daily.

The radiation oncologist is Dr. Fass. He was the director of radiation at Greenwich Hospital for 16 years and knows Dr. Hollister well. Dr. Hollister remains ‘in charge” of my treatment and any complications which may arise.

The link below explains how this treatment is different. From him, I understand that this is the machine of the future and that all hospitals will have this when their multi-year contracts expire. This treatment is not controversial and delivers exactly the same amount of radiation as the old machines.

http://www.instituteigrt.com/

Other treatments

I have started Tamoxifen and will be on it for 3-5 years.

http://www.cancer.gov/cancertopics/factsheet/therapy/tamoxifen

When radiation is complete Dr. Hollister will begin treating me with bisphsophonates directly as I have decided not to participate in the Bisphosphonates trial but simply go to him directly.

http://www.cancer.gov/clinicaltrials/ft-SWOG-S0307

I continue to work with Dr. Veltmann in his research study on methlyating estrogen more efficiently and plan to visit him in New Mexico in October or November depending on how radiation goes. Pray for me that I do not have complications in radiation and that my blood and skin remain strong.

Love,

Babs

I was supposed to start radiation today but they changed it to Wednesday at 6pm….can’t think of a worse time to start as I will miss dinner every day but there it is…

I am obsessed about my hair growth. First I was obsessed about the loss but now I am obsessed about the growth. I have eyebrows for the first time in my life. Dark, very hairy eyebrows…the body sure is a mysterious thing.

I continue to get better and for the past week have barely been napping. Today I got back to spending a day at a desk doing admin for the first time since the hospital stay….talked to Richard at work and was easily able to talk and visit.

I am worried about radiation but will learn to meditate….

I come back from Chicago to see Hollister and discuss Radiation. I still have not chosen my radiation doctor and tell his office not to send the paperwork anywhere.

 I have my ‘fitting’.

 I decide to go with Dr. Fass because it is more precise although it will take so much longer. Unfortunately, because I did not set up the schedule before going to Chicago, I have no time slot.

I lost my last eyelash yesterday. I have 3 eyebrow lashes on the right eye and 2 on the left. The hair on my head has started growing and I have some peachfuzz everywhere except on the side of my head. My Eyebrows are starting to grow back too.

I think I am okay now and must only now get the diet going.

Hello,

I saw the 3^rd radiation oncologist today and after hearing her thoughts, I have made up my mind to go to the radiation oncologist who has a new machine called Tomo Therapy which allows the area to be more accurately targeted. I am pretty sure this decision is final but I will discuss it with my oncologist, Dr. Hollister on August 10^th when I return from Chicago.

I will be radiating both the breast and the lymph nodes.

In theory, I will begin daily radiation the week of August 17 for 7 weeks. I will provide a better update regarding all treatments after meeting with Hollister.

I am feeling much better enough so that I now realize that I have been in shock since March 2^nd and am just beginning to understand what is happening and be able to read a little about it. I am grateful to be well enough to travel and look forward to seeing friends and family.

I am grateful for all your thoughts, prayers, calls and look forward to talking soon.

Love, Babs

So if I am not to continue with chemotherapy, the new plan of action is;

1)      Radiation

2)      Tamoxifen

3)      The IV Bisphosphonate Zometa taken once every 6 months for 3 years

When I first met Dr. Moore, she told me about the Bisphosphonates Trial and suggested that it was the only clinical trial currently ongoing that was worth pursuing. She spoke rather passionately about it and explained that IV Bisphosphonates would become standard protocol shortly.

Greenwich Hospital was also participating in the trial and I had spoken to the nurse in charge about it. Every time, I went to the office which was often everyday, I simply had no more left to give to go and find out about the next step. So I kept putting it off, assuming that I had an indefinite period to sign up.

I had mentioned it to Hollister at the last appointment and I had told him I was too tired to cope with the trial. I asked him if he could just give me the drugs without being on the trial. He said. “Yes. It may not be covered by insurance but I can treat you off-protocol. I have done so with many patients.”

When I had first told Dr. Veltmann about the IV Zometa he was horrified. He had told me stories about altering people’s bone density without the use of bisphsophonates.

I had taken a bone density test immediately before starting chemotherapy which showed osteopenia in my neck. He had ordered the genomic testing for my bones and received the results back today.

I have SNPs on 4 out of 5 markers. I am not surprised since by the time my paternal grandmother died she was a hunchback. When my maternal grandmother died, her osteoporosis had shrunk her considerably although she was not stooped and my father has been shrinking every time I see him.

I don’t know exactly why they are giving IV Bisphosphonates and according Dr. Moore, they do not know exactly what function it is performing. They only know that it is decreasing recurrence in the breast cancer population.

Breast Cancer Recurrence happens most frequently in the bone. Intuitively this makes sense to me as I could feel my bones being destroyed during the chemotherapy. I would sit in the shower and I could feel the destruction in my bone marrow (and bones) when I was taking the multiple shots of neupegen daily.

Dr. Veltmann thinks I should just concentrate on building up my bone density. He actually lost his temper when I told him I was definitely participating in the clinical trial which I thought was very strange since he obviously had no problem whatsoever with me proceeding with chemotherapy even when I became completely toxic.

Dr. Veltmann adds more Calcium and Magnesium to my supplement schedule. He also says that I must take the pharmaceutical, Calcitonin.

I am confused but mostly I am tired and will not think about this now.

Saw Dr. Ann Moore today with Vic and Mom. I went in the appointment really nervous about stopping chemotherapy before 8 treatments and ruining my chances of risk reduction and left the appointment really annoyed with Dr. Hollister and myself for letting me live through the craziness of the last 11 weeks. After talking to Dr. Moore, I feel like Hollister is insane. She said that of the many 1000’s of patients she has treated over the years she has only seen 1 repeat 1 with blood counts as bad as mine.

Why did he do it? I will ask Monday but I know the answer because he could. We didn’t object and didn’t realize how out of the box the situation was…..

Now I am worried about side effects from the rigor of the treatment but at least I am not worried about risk reduction. According to Dr. Moore, I have had many times the normal dose of chemotherapy that other patients have…..

At my visit with Dr. Moore, the ‘breast cancer goddess’ she discussed the following:

1)      My chemotherapy treatment was hard on my white blood count and therefore probably more effective.

            We could consider that I had definitely had 100% of the dose considering the bad            blood   counts.

2)      Since I am estrogen positive the A/C (Adriomycin/Cytoxin) part of the treatment was much more important than the Taxol and that the ratio of benefit should be considered 80% (A/C) to 20% (Taxol).

In fact, according to Moore, there have even been some trials that state that Taxol             doesn’t            benefit estrogen positive cancers.

1)      Chemotherapy was only one part of my preventative treatment. Taking Tamoxifen is and extremely important next step and should be started 4 weeks into radiation.

2)      Ovarian suppression was very important as well should my period ever come back.

3)      Radiation was next and I should be very careful about my blood count during radiation and be monitored closely.

 Then she was done with me. She said in the 1000’s and 1000’s of patients that she has treated she has only had 1 with a blood count as ‘bad’/low as mine. That she would never have had the stomach to continue to treat me as Hollister had. She said that she would have lessened the dose and lengthened the time between treatments but none of that was any guarantee that I wouldn’t have had the same type of reaction to chemotherapy.

My white blood cell count is back up today and my anemia improving today.

I will send details next week after I meet again with Hollister but want you to know that Vic, Mom and I met with Dr. Anne Moore (top breast cancer oncologist in the NYC area) today at Weill-Cornell to discuss my status after my extremely frightening hospital stay last week. She and Dr. Hollister had spoken earlier that morning about my chemotherapy and the toxicity to my system.

She said that in the many thousands of breast cancer patients she has treated, she has had only one patient whose blood count had gotten as low as mine repeatedly. She said that she would not have had the stomach to treat me as aggressively as Dr. Hollister and watch me be hospitalized many times over. (I was only hospitalized once but should have been 3 times as typically if a chemotherapy patient requires IV antibiotics it is done in-patient not out). She also, incidentally, said that both she and Hollister had studied under someone who schooled them to only resort to blood transfusions under the most dire of circumstances which is why Hollister kept avoiding them.

She said that although I have only had 5 instead of 8 doses of chemotherapy, they could consider that I had had the equivalent of many times more that based on my white blood cells plummeting and that I certainly had had “ENOUGH” chemotherapy.

She said that chemotherapy was only 1 step of preventative therapy and that now it was time to move on to hormonal therapy and radiation therapy. She cautioned that my white blood cell count must be monitored closely during radiation based on my severe reaction to date.

 I will be meeting Hollister on Monday to discuss next steps and will begin scheduling radiation doctors’ appointments tomorrow.

I will stay here to be monitored until my blood returns to normal, until my stamina returns and I am no longer anemic….and assuming that happens within a few weeks plan to go to Chicago for a break before beginning radiation therapy for a well-deserved break.

I will update again next week.

I still need prayers to get my blood back to normal and be able to walk up a flight of stairs without my heart-pounding out of my chest so keep them coming. They have certainly helped.

 Love,

 Babs

After my stay in the hospital, 3 more days at home on bed rest with a low-grade fever, a declining white blood count and stable red, Dr. Hollister said, “ I am disenchanted with your treatment”. It didn’t sound as harsh as that coming from my Norman Rockwell oncologist.

Vic, my mother and I were discussing the future treatment options and that was the first thing he said. After much discourse during which it was abundantly clear that there are no numbers to be had for someone who drops out of treatment….we left it as follows….

I would wait another week and then meet to discuss whether I stopped or continued with 50% Taxol.

I called Dr. Anne Moore and she said Stop. She said that I had derived the biggest benefit from the A/C portion of the treatment at 80%. She said that my bone marrow is very sensitive and we could consider that I had been given twice as much medicine as a ‘normal’ person. She said that I had probably derived 85% of the treatment and that she was extremely comfortable with me stopping.

 Vic, my mother and I will see her on Wednesday. We face a big decision but it was at least comforting that her opinion was unequivocal as opposed to Hollister who was more leaving it up to me.

Babs–what a hard time you have had with this. I will be in the office all week–happy to speak with you after you meet with dr hollister-you can call me. A.M