Calling all TNs
Comments
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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
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Thank you for the information Lyn. It is hard to hear the tough SE, and complications that can happen. Chemo is hard. Being TN is hard and just adds to the confusion. Having overwhelming SE just tips that balance. I hope you find the answer and can heal!
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Thank you for your kind words, Mncteach.
Lyn
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Thank you for sharing Lyn. I appreciate you sharing your experience, because we all need to know the whole picture. I hope that things turn around for your lasting effects.
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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...
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Dear VLH/Lyn and all others that feel this way
I too feel the same way every 3 months or so. For me chemo was not bad, I plowed through. Then came the nerve block before my mastectomy. I've had varying types of pain . After rads, my otherwise manageable arthritis, was out of control. One week I was walking building my stamina, the next I could barely walk on a cane without pain. The only relief I get is cortisone in both knees every 4 months. A month prior to my shot, the hip, groin pain becomes unbearable. A vicious cycle.
I've discovered I'm now bone on bone in both knees. Though the pain is minimal, it has thrown how I walk/gait to my detriment. Along with this I battle lymphedema in my arm and my upper trunk. Though therapy on these helps, its the pain daily in my hip area that has made me rethink all of my treatment. I have excruciating pain in that area till I walk 10 steps, then its bearable.
I look like a lunatic counting to myself... when I get up... The comedy of it, stops me from crying.
It helps to see others who feel as I do. The awful part of all is without the harsh treatments, I would not be entering my 4th year of NED.
Now they want me to have intense therapy on the hip/pelvic area. The physical therapists says all of my joints on my worst knee side, are out of line. So more pain to get to what?
I truly gave no thought to how life would be after treatment. I was of the mind that once over, I would recoup and at least have my mobility. The one thing I gave no thought to losing, for now is painful.
I hate this disease. In 2 weeks I ill have my shots, and some normalcy and the pain will hide.
Just venting.
On the good side, my 6 month old granddaughter makes my day. All things disappear when she is around.
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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
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I had two mildly arthritic joints (L knee, R hip) that used to ache regularly... but both are pain free now, due to the load of anti inflammatory nutritional supplements I am on. I know there may be limits to the power of the right supplements but I would strongly suggest anyone suffering to invest in one or two appointments with an experienced naturopathic physician, in case there are dietary or supplement-based protocols you can do, to rebuild your system. The one I saw works a lot w cancer patients undergoing chemo etc. So many high-inflammation foods are also cancer-promoting foods... so many connections between metabolic disease and cancer as well.
My MO was skeptical, but not opposed, to the recommendations of the Naturophethic physician I consulted, but they were incredibly helpful to me for withstanding chemo, and honestly I am in less pain now than I was before diagnosis.
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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.
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Hello!
I just had my left implant removed due to cellulitis. That resisted two week of oral antibiotics. That resisted two week of daily IV antibiortics. Turns out a number of patients who opt for breast implants get cellulitis, but usually not this strong, resistant kind.
About comments above: I was Stage 3B and did not get a full pathological response to those four awful chemos, including carboplatin. I was 63 when this began, and some days I feel 83 now. Since chemo and while on Xeloda, I received knee injections and a hip epidural for joint plain. They both helped some. I wish we TNBC folks and our oncologists knew which chemos were effective. I think research is moving in that direction. Still, knowing what I did in November, 2017, I would ask for everything my doc could give me. Even if I'm achey, I want life.
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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
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Paula, i’msorry to hear that you you had to have your implant removed. I hope you have a smooth recovery.
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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
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Ag23, sending you hugs, and strength as u go thru this journey.
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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.
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Ag23 I’m so sorry to hear that news.I agree with santabarbarian, lots of Stage 4’s are living long lives, I do wish you all the best.
Flynn: please talk to me about your Xeloda experiences
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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.
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Kwilli, I think going thru treatment weighs on you but I found Xeloda very manageable. I was careful about exercise, especially in the beginning. Once I figured out how much I could do without making my feet feel tingly, I was set. I ate starch with my meds twice a day. Once I skipped food with my pills in the morning and regretted it most of the day. My counts have been challenging since day 1 so that was my biggest issue. I caught every virus that came near me. I also got tired more easily but I kept my regular schedule up except for when I was ill. If you're starting up, I hope it goes smoothly.
Btw, I didn’t use special creams or anything I just moisturized with the aveeno that I usually use.
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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?
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Ag23, I'm so very sorry to hear about the mets. I hope your medical team can develop an effective treatment plan that gives you many years with your children. If you're comfortable doing so, please keep us posted as you learn more.
Lyn
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All, thank you for your understanding regarding sharing the challenges I've experienced from cancer treatment. I hesitated because, again, I don't want to dissuade anyone from pursuing chemo. I just think we need to acknowledge the possible challenges while recognizing, as Santabarbarian pointed out, that one could, of course, forego chemo and regret that decision if cancer recurs.
Before the herniated disc problems & cancer treatment, I was down to my 1980 weight and expected to return to an active life as I did after two hip replacement surgeries in two days. Instead, my left arm is 25% larger than the right, I often worry about falling and I'm nervous about a simple grocery shopping trip. It's disappointing that things didn't work out as expected, Still, this month marks two years since I finished chemo and I'm NED so far and I find that very encouraging.
Lyn0 -
Kwilli, yep I am done with planned treatment. I do have reconstruction coming up but that’s another matter. At my last Xeloda check up the MO scheduled me for my next follow up in 6 months. At that appointment, we’ll go over survivorship, assuming all is still well. It’s a big shift in thought process- but it’s one that I’m very eager to make:) I’m not sure how often i’ll be seen after my next check up.
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Ag23, I’m so sorry. Did you have positive nodes back during your original diagnosis? Do all the fun things with your kids, live.
And yes, cancer sucks. So does chemo. Low counts and therefore self-injected neulasta/neupogen, neuropathy, no hair, no eyelashes, no eyebrows, no nose hair. Diarrhea and constipation, sometimes in the same day, fatigue, weakness, nightly fevers for no apparent reason, persistent cough, allergic rash, reawakened auto-immune disorder, and those are just the things I can remember off the top of my head, three years later. It’s not for sisses, but the alternative....
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I just had a friend text me that I'm "lucky" I don't have hormone positive cancer because Tamoxifen made her other friend "moody" when she took it and, being triple negative, I can avoid that. I don't even know what to say to that.
What I want to say is that her friend had that choice to refuse treatment, but apparently decided that the side effects were worth trying to save her life and I don't feel remotely lucky that I don't have that option even available to consider.
What I'll probably do is delete the text, roll my eyes and move on.
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I don’t think people mean to say or text stupid things, but they do!
I still deal with muscle pain from chemo. Yes, I look fine, I’m young, but when I’m volunteering at a school event I can’t stand for three hours - sorry not sorry! Don’t say to me , “ I thought you finished treatment months ago?” You don’t get it and you’re annoying me.
Just like someone saying to me, “I guess sometimes you just forget you ever had cancer.”
Not really sweetie, get back to me in a couple years.
But there are those who get it, who I love and cherish.
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When people are too solicitous it's also sometimes annoying. During chemo, a dear old friend of mine heard "constipation" once and thereafter always inquired abut whether or not I was pooping! I finally said "this is a conversation I don't want to have until I'm 80." She got it.
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People DO say pretty dumb stuff. my Aunt told me she was expecting my DMX scars to “be worse”; that it just looked like “deflated balloons” and was glad I’m “all better” only a week after surgery.
I guess while annoying; I’m happy they have no idea what we’re going through?
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I try to remember that it is the rare person that intentionally says something hurtful. Just ill thought out comments that people say when they don't really know or think thru what to say.
It's hard but we have to be tough to survive the treatment and those around us!
Love and best wishes to you all X
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Chiming in to wish ag the best with finding treatment to slow the wrath of this beast.
so many of us feel so much worse afterward, and to tell a small truth, I feel it's because how breast cancer is portrayed in the media. My prior thoughts were yes treatment is horrible, you get through it, rest up a bit and then walla back to your prior life.
So not true, and if you choose to not have treatment the alternative many times is fast painful progression. I've regretted my aggressive treatment many times during these last 3 years, but the alternative for me personally was not an option.
I have an appointment with a naturepath next week, regarding all my joint pain. Hopefully I will get a combination of things that will give me some longer term relief.
So it goes.
Val
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Thank you,Flynn. I'm really feeling set back with overwhelming fatigue following those two surgeries so close together ,as well as the iv antibiotics. But I'll get through this!!!
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