Bad first---I am losing my oncologist! The man that has kept me alive for the last 20 years is moving to Massachusetts. I will miss him. But, his focus has shifted away from breast cancer to other cancers, so we were no longer the best fit.
Good news---David M. Waterhouse, MD, MPH is moving to Falls River, Massachusetts to help establish a cancer program with Dana Farber there. As I said, his focus is no longer breast, but please keep in mind for friends and family. When I find out more about what he will be doing (at my appointment on Monday), I will post it here.
Anne (in Cincinnati)
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CincinnatiExperience
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Hi Anne,Thank you for your post. My cousin lives in Falls River and commutes to Dana Farber. It’s very difficult for her because she doesn’t drive. She has mbc. Please keep me posted about this new program and this oncologist. Thank you very much
Hi Anne. I was inspired to hear you have been living with cancer for 20 years. I am recently diagnosed with Mac. Do you mind me asking about your journey and the meds/treatments you have been on. I want to have hope that I can live with this for a long time x
Well, it has been so long, I don't remember every detail, but I will put in what I remember. It's a long story with lots of details, so if you are squeemish, you may want to skip it.
Diagnosed in February of 2002 with Inflammatory Breast Cancer by a breast surgeon. She did a biopsy and hooked me up with my wonderful oncologist. Testing . . . Testing . . . Testing. You all know how that goes. Then, I was on Cytoxan/Adriamycin for 4 rounds, then Taxotere for four rounds. That was followed by 7 weeks of radiation. Surgery in August (bilateral with LOTS of lymph nodes involved). I was put on Femara for many years. Eventually, that no longer seemed to be working, so I was switched to another similar drug. Of course, there were scans and testing throughout, at regular intervals. I had surgical biopsies once or twice to test areas of concern. That's the end of the beginning. I was put on a trial of Ibrance for awhile, but that really took a toll on me and I asked to be taken off (my husband insisted--he thought it was killing me!) I really did have bad reactions to it.
About 6 or 7 years ago, I developed s small wound on my right side (that was the larger of the bilaterals, taking all muscle, etc.) I went everywhere to try to get some help (plastic surgeon, thoracic surgeon, wound care specialists, etc.). I even travelled to Michigan (5 hours each way) to get a second opinion from UofM Cancer Center. I went through hyperbaric oxygen therapy for a few months (that was a trip) to try to heal the wound that kept getting larger and more worrisome. Near the end of this headache, my wound started to bleed like crazy, usually in the middle of the night, causing a complete change of whatever I was wearing as well as the bedclothes etc. Oh, and to make it worse for my husband, for part of this our washer died and my husband had to make regular trips to the laundromat!
In the middle of the wound issues, in May of 2019, I was diagnosed with MBC somewhere in my guts when the fluid in my chest started taking over and pushing my lung into a tiny later. I had a surgical procedure to remove most of the fluid and was on home health care and oxygen for several weeks. That all resolved itself. I was put on Verzenio. I am also on Faslodex.
This past fall, I developed an infection on my chest and that caused severe swelling of my right arm, and frankly, extra fluid throughout my entire body. I was hospitalized for about 2 weeks. Had surgery to clean out the infection. (Funny story, when my oncologist came to see me, he had the good news that my cancer was finally in remission. He stopped the Verzenio, but I still get the Faslodex.) They installed a wound vac that was on from late November until February. I was also on very heavy intravenous antibiotics 24 hours a day. In mid-February, the plastic surgeon took a skin graft from my upper thigh and put it over my chest wound (it is now about 3 inches by 6 inches).
On top of all of that, I have an open prescription for an antibiotic (to use whenever rashes break out on my chest) and also pain meds (for whatever is painful at the time . . . my chest, the neuropathy in my hands and feet, etc.) Oh, and here is the kicker, all of these meds have made me diabetic! My sugars went from where they should be (under 100) to 600!!!! in a matter of months. I am now on daily insulin injections. My husband has become quite a good nurse.
I probably forgot half of what you might want to know, but let me know if you have any questions.
Wow Anne - you are amazing and have been through so much. You are on different meds to me for your mbc and have had fabulous results going into remission. I was hoping I might have a similar experience on ibrance having seen a good reduction in tumour size over the last 15 months- although now worried the treatment is becoming less effective. Fingers crossed it continues to keep things stable for me. I wish u all the best and thank you for sharing xx
Well you are getting a new oncologist for the next 20 yrs. ! But I know it is sad to lose someone who has been a part of your journey. It will be interesting to know his plan for the future.
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Moving need help finding a new oncologist 
New York here I come!!
I’ve seen the oncologist
