Calling all TNs

Alexndriacat, I felt a lot of activity... softening and shrinking. It's very reassuring to feel the tumor melting. Is it getting steadily smaller?

Thanks for posting the link, Notdefined. It's good to keep up with new areas of interest.

Welcome Alex & Kat. I could feel my tumor decrease and it was getting softer as time went on. My MO never brought TC up as an option so I don't have any advice on that. I seem to be reading about TC being offered more often than in past so perhaps there's new info since I started 2 years ago. Best wishes to both of you!

Anne- glad chemo is going smoothly for you, hope it keeps up!

Alexandria, the shrinking is a good sign! Mine went from "walnut in the shell" to "pecan" to "almond" to "lentil." It shrank to the point it could not be felt at all by chemo #4. I think it is possible to shrink, then re-grow, so my MO did not get too excited until the shrinking showed itself to be sustained. (And he did not get REALLY excited until the pCR was proved.) But at about chemo #4, when I was feeling very exhausted and anemic, he said, "Ten years from now, you'll look back on this experience and it will be a little blip." -- THAT made me happy, because he's the king of conservative-double-blind-scientific proof and does not say things like that lightly!

kber, that is great news!

santabarbarian, your story is very encouraging! Thanks for taking the time to chat about it.

I would suggest TC, not AC+T because of the modest potential incremental benefit vs. the increased risks already mentioned.

Beginning with my second AC infusion, I had issues with shortness of breath and a racing heart. My resting heart rate went from the low 70s to 100 bpm. My MO sent me to the ER where I had a chest X-Ray, EKG and chest CT with contrast. (The nurse ignored me when I said no IVs in my left arm and I developed lymphedema, perhaps a coincidence?) I had an echocardiogram the following day. The tests were compared to pre-chemo tests at the same facility and nothing alarming was disclosed so I completed chemo, had a breast reduction and radiation.

It's now months later and I can't get my endurance back. I know I need to book an appointment with a cardiologist, but after 142 medical visits in two years (2016-2017) on top of battling severe Fibromyalgia for 30 years, just making my oncology visits and working part-time requires massive effort. (I had a misdiagnosed herniated disc and inflamed SI joint, two lumpectomies, a PICC line and two weeks of IV antibiotics for an infection from having a seroma drained, my first port retracted 3 cm so had that replaced, the lymphedema, flunked all three of my balance tests before and after PT due to chemo-induced peripheral neuropathy, blah, blah, blah.) As an added bonus, when I stand or walk for an extended period, I feel lightheaded and I discovered that my blood pressure plummets, e.g. 90/50. Is it autonomous neuropathy? Even ignoring the financial impact of co-pays and deductibles yet again, just the idea of another surgery or more rehab / PT makes me want to scream. I'm losing one job and have time off from the other in late April so will try to gird my loins and set something up for then.

In retrospect, I wish I'd listened to my instincts that screamed at me not to do chemo. It's imperative to note that CHEMO MIGHT SAVE YOUR LIFE and many women have little or no significant long-term collateral damage. For me alone, if I could do it over again, I would roll the dice with just surgery and radiation. I hesitate to write this as I don't want to increase anyone's apprehension about chemo. My experience is the exception, but I think it's important that we recognize that someone has to be the lucky winner in the "rare chance" of this or that complication lottery. In an effort to be encouraging and nurturing to newly diagnosed people facing tough decisions about treatment, I know that I sometimes feel guilty for bringing up the bad and the ugly side of treatment. Still, I think it needs to be an important part of the conversation.

Lyn

Thank you for your kind words, Mncteach.

Lyn

I agree, the downsides of treatment must be reported and understood. We all have to assume certain risks in our treatment but it is wrong not to know the bad possibilities. I appreciate you sharing and I am sorry for your continued SEs. It is definitely important to the next people to give accurate portrayals of things we go through even when negative.

I am sure anyone with an underlying condition (like fibromyalgia) is in a worse position regarding SEs because your system is struggling already. This is an important consideration for anyone with chronic health issues prior to BC.

Finally, I know there are people with recurrences who are thinking "Why didn't I DO the chemo?" so it's very hard to know in advance. We do the best we can with what we know, and cross our fingers...

Valstim52, you vent away. Bcuz I can relate, im 47 and my bday is the 11th. The pain in my back &hip takes 10 steps and then im good until i walk too much. I dont know what all uve tried and if your like me where some days are better than others. But Im going to get my vitamin levels checked and start PT to try to strengthen stretch everything.any suggestions?? I cant do pain pills whole I work..sending cyber hugs

I agree that it's good to share the good & the bad about treatment. My heart goes out to those of you dealing with serious side effects on a daily basis. I'm fortunate in that while I'm not the same as I was before, I'm ok. My MO was very adamant that we take an aggressive approach to treatment based on my situation. As time went on and my side effects were compounding, she was once again adamant. This time, she argued forcefully in favor of stopping chemo early. I ended up with a small of residual left and have wondered if I made a mistake by stopping early. I'm at peace with my decisions now. I know several people who have ongoing issues from treatment (not just chemo) but I also have to say that one of the few TN's that I've met IRL is very close to entering hospice. She declined chemo- elected to only have a bmx- because she felt that her less than 1 cm tumor, that was not in her lymph nodes, would be ok. She was diagnosed about a year ahead of me and she just found out that she had mets last summer. The only thing that I know for sure is that cancer sucks and I hope that everyone one keeps doing the best they can.

Lyn, I sympathise with you. I had triple positive bc 8 years ago and did FEC-D. The taxotere almost killed me, and I couldn't do the last treatment. Five years later I was dx with triple negative in the other breast. I told my husband and family that I wouldn't do chemo again, I would just take my chances. They were all very supportive, and said it was my choice, they would stand behind me no matter what.

After a couple of days, I decided I could at least try chemo, and if it was too much I'd stop. I could only do 3 AC treatments - having already had 3 epirubicin the first time, three adramyacin treatments took me to my lifetime limit. It was pretty bad, but I kept on. My liver almost shut down during the taxol treatments. 

I now have mild heart damage, but so many other issues I'm dealing with that sometimes I wonder if it really was worth it. I'm pretty sure that if it comes back I won't be doing any further chemo.

Trish

I spent the last 3 years trying to forget about my cancer life. I was doing a great job until Feb 23 when I had two seizures. After a battery of tests, i learned I have a brain mets and a 1.3cm lung met. My kids are now 4 and 7. I thought I was nearly out of the woods and this was a complete slap in the face. Im having a hard time processing that theres no cure and Ill be in treatmen for whatever remaining life I have left.

Feel free to flood me with an examples of tnbc mets sisters that lived/are living many years of full life. ❤️Im heartbroken and devastated

Ag23, I am so sorry to hear this. Do you have a sense of what the plan will be? Are you at Dana Farber? There are indeed several TNBC sisters who have been living with stage 4 for for a long time, and I am sure one will chime in soon. You might find them faster on the TNBC Stage 4 threads. Wishing you all the best.

Ag23, i’m so very sorry that you’ve been diagnosed with mets. That must be quite a blow. I sincerely hope that your treatment holds the beast in check and that you get many years and wonderful memories with your family.

Flynn, thank you. Thank you so much. We’re almost identical in terms of dx and treatment. I appreciate your help! Are you over active treatment? If you are, are you monitored in any way?