ATEMPT Clinical Trial - Roll Call
Comments
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MIPat, I had feelings of Oh no what do I do now when my treatment ended. You feel suddenly like no one is taking care of you and you're not actively fighting the stupid cancer. I promise you this goes away. I also had issues left over--low platelets--that didn't resolve for a while. It gets better and better slowly--the return to normal life, though altered by your experience for sure.
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Hi,
I will be having my LAST treatment next week! #17 - yay!! I can't believe I have (almost) made it this far. I travel by plane out of state EVERY 3 WEEKS to get this, and I'm just plain tired (or "plane tired." sorry, it was too easy!).
But here's my SE question - I just had a teeth cleaning (2 weeks ago?) and now my teeth are turning gray!! Eek! My dental hygienist said this is chemo-related and that it will go away. Is this correct? Have any of you experienced this?
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Hi Sara506-- so exciting that you're almost done! I didn't have the dental SE that you describe, and I haven't seen any other posts about it from this group. If the dentist has seen this before as a chemo SE then it's almost surely nothing to worry about. But I'd mention it to your oncologist just for the record.
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Wabals - Thank you. It is reassuring to know that I am not alone in having this type of response.
IsabelArcher - I think that not actively fighting "stupid cancer" is making me feel vulnerable. It is a feeling that I don't like at all. I know that it will take awhile before it is not all in the front of my brain. It will help when the liver issue resolves itself and my port comes out
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I met with my MO today for the one year after treatment follow up visit, vitals, and blood test. I asked how the other patients were doing - all are well and will or have already completed their treatments. My platelets are still a bit low, but higher than this time last year, so I guess that's a good sign. We discussed hot flashes and possibly Effexor may be an option soon. Anyone here taking Effexor?
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TD, congrats on your 1year!!!
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Thanks Serenitysis! Pretty soon you will be celebrating your 1 year too.How are you doing?
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I am doing so much better, both physically & emotionally. Still trying to gain back a little more of the weight I lost during treatment (20 lbs.), due to appetite loss. Looking back, wasn't that year-long treatment a slog?!
I hope everyone's doing well! I have my one-year coming up in October.
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Serenity--so glad you're feeling better! Yes for sure that year was a slog. I wish I could lose the 15-20 pounds I gained AFTER the treatment (without doing anything to cause weight gain)!
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Hair loss question:
I had my last TDM1 infusion on April 28th. Over the last couple of months I have been experiencing excessive hair loss. Had some hair loss at the start but then it had stopped. Now after treatment sudden excessive hair loss ... am taking b12 and biotin.
Any advice?
Thanks!
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My hair got stronger with Omega-3 capsules. I had a previous prescription for Lovaza, which has absolutely no fishy smell or taste. The best outcome was with my fingernails, which were getting ridges and also tearing easily.
You did great to stick with the TDM1 infusions!My body took a long time to slough off the effects of treatment, but I figure this is a strong and effective medication that I was lucky to have available (btw, I only had seven infusions before I stopped because of neuropathy in my feet and legs).
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Thanks Ozoner! I will try Omega-3.
As a side note, just wanted to mention that I recently joined the "Living well Living strong" exercise program. Am enjoying getting back to the gym.
Best,
Reikion
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Reikion-- I didn't have hair loss during TDM1 treatment and I wouldn't say I had any afterward as a result of the treatment. However, I do find much more hair in my comb than I used to when i was younger, and my very, very thick hair is now, at age 56, kind of average I guess. I assume it's part of postmenopausal aging, but I don't like it one bit! How old are you, and might the hair loss you're experiencing be related to menopausal changes and not the TDM1? I got my diagnosis at the same time that I stopped having periods (51, going on 52), and it can be hard to separate out one cause from another.
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Isabel,
I'm 44 and my periods are normal. I had a lot of hair loss happen 2 years ago before diagnosis, hence some concern ....
Reikion
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Reikion--
I see. Different set of issues. I hope the omega 3 that Ozoner recommended gives you good results--I might try that myself.
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My liver values returned to normal and on Friday they took out my port. Now I feel like my treatments are finally over
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great news MIPat! Congratulations!!
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Hey MIPat!
So happy for you!!!
Feels weird for a long while after conclusion of treatment, doesn't it. Sometimes I had to remind myself that I could finally exhale and take it easy.
Congratulations!
I'm looking forward to someday finding the results of this trial--while concurrently leaving my concerns in the dust. Wishful thinking, I know, but we can do this
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MIPat-- Great news! So glad to hear this!
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Congrats on finishing your last steps, MIPat!
Nice to see some activity here again!
I had my one year follow-up appointment last week. Very uneventful, fortunately! Hard to believe it's been a year. I’m doing very well, finally, and have gained back most of the weight I lost. I have residual neuropathy in the toes of my right foot that may never go away, but small price to pay in the scheme of things. Of course my mastectomy/reconstruction is an unavoidable daily reminder, but I’m pretty used to it by now. I’m grateful for the TDM1 treatments and look forward to finding out the trial outcome someday
Similar to Reikion’s exercise program, many Y’s offer the Livestrong program for cancer survivors. I did it and it was great. It’s free.
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Serenitysis-- those uneventful yearly appts. are great, aren't they? May they continue for all of us. I also feel grateful to have walked into Dana Farber at the exact time the TDM1 trial was starting. I guess my stupid cancer had good timing. ;-) And yes, Frankenboob doesn't let you forget, but you do get more and more used to it. Like, whatever.
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MIPat, Congratulations on finishing your treatments!
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Thank you to everyone. It feels good to have finished up treatments. I am not sure how much I can put things out of my mind. Every check up will evoke some anxiety. There is really no marker at which you can breathe a sigh of relief. Since there is no answer as to why I developed breast cancer (though I am putting my money on an extremely low Vit. D level contributed to it) there is always the thought of “When?”. But that is no way to live life so I will have to actively choose to push it out of my mind. In the meantime I am making changes to optimize my health.
I will say that the one lingering issue I have is my memory of past events and pulling up words isn't as good as it use to be. I think that the stress of it all contributed greatly to that. Hopefully it will drastically improve. I've gained back some of the weight, however I need to loose a lot so I have to make better eating choices
On a brighter note... For over a year and a half I drove the same route to the University Hospital, sometimes daily. So to celebrate the end of treatment I picked a restaurant that had us drive the exact same route, but had us stop short of the hospital. Standing out front, we could see the hospital at the top of the hill. I felt a bit like I was flipping off cancer. It was satisfying. Since cancer is hard on the entire family, I had gifts for everyone. I did everything to fight thiscancer that I needed to do because I didn't want to leave my children. I gave my daughter a Pandora bead with hearts on it. My personal faith gave me comfort and support and brought me closer to God. I gave my son a leather bracelet with a silver cross. My husband held things together and supported me in every possible way. I gave him a piece of a geode for being my rock. At home I gave him a 26 pound geode that we are going to put into our garden. I am glad that we can all put the last year and a half behind us.
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MIPat-- "Flipping off cancer!" Yes! The way you marked the end of your treatments, with gifts to your family, is beautiful. There is no denying that checkups are anxiety-producing, and this isn't going to change. I try as hard as I can to live as fully as I can every day, and accept that checkup days are just freaking awful. I would rather not have had cancer, but since I did, I am letting its presence in my life teach me how to live better. You're right that we can't breathe a sigh of relief, but with every year that passes the chance of recurrence does decrease. We are among the lucky ones with very early, tiny cancers that were extremely treatable. I hope you feel better and better as stupid cancer gets farther and farther behind you in the rearview mirror.
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So pleased to see your updates... This small group remains "without evidence" thus far during these higher probability years!!!!!! Now if we can only learn the same to be true for the other several hundred participants.
Headed for my 3rd year check-up with the trial oncologist and imaging center (early November). Hard to believe three years since treatment started and two years ago infusions were done! Oh .... just as important I've just about made it through my 3rd Pink-tober....guess I'm not so into the "save the ta-ta" hoop-la these days.
Best wishes to you and yours for the 2017 holiday season!
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Congrats MIPat!
MaggieCat, all the best for the 3 year check. I have my 6 months post treatment check early November too. Will update after.
Happy Holidays all!
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MaggieCat and Rekion wishing you both the best at you follow ups.
How do you all feel about the term “Survivor “?
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MIPat, I don't use the word "survivor" about myself because I didn't almost die.
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http://www.croh-online.com/article/S1040-8428(17)30351-7/fulltext#back-bib0255
Interesting summary of Her2+ treatment...
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Hi All
I have another article for you to read from the October 2017 issue of Oncology Nursing News. Scroll down the page until you find the article in the Continuing Ed section. Also read the Nurse Perspective which summarizes the article. The article is a summary of the findings of the Phase II ADAPT Trial conducted by the West German Study Group. The study followed 375 women assigned to three different arms and they looked at pCRs (pathological complete response = no residual histolgical evidence of cancer at time of surgery) of each group.
These results look very good for those of us who were unable to complete the full year of therapy due to side effects. The study found that after only 4 cycles of T-DM1 in HER2+ Breast Cancer yielded pCR rates comparable to the standard treatment of chemotherapy plus herceptin
http://www.oncnursingnews.com/ce/clinical-insights-october-2017
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