Any Chemo "Drop Outs"?

MomtoIrishQuads · July 2014

I've decided not to put my body through the remaining 3 tx of TC. I had a really rough week and my oncologist originally told me that chemo was "up to me". Turns out that it's only worth 3-4% reduction of reoccurence (I somehow missed that point).

Just wondering if there are any downsides from dropping out? (e.g. are the microscopic buggers activated?). I'm telling you, from the way I felt, they must all be dead ;-)

Anyone else drop out? And also - does your hair grow back more quickly? (haven't lost mine yet but I expect that next week).

Irish Mom/Deb

MaDee53 · July 2014

Hello, MomtoIrishquads,

I am curious why you are not taking hormone therapy for th ER+ receptor. I don't think I would have giving the chemo up all together. I would have looked for something that is more tolerable. I am doing 12weekly Taxol chemo with targeted therapy Herceptin fr the Her2+ status. Taxol is very tolerable. I think you should complete one type of therapy. You might want to try a Alternative treatment. Gerson Alternative Cancer Treatment is one of many. I would'nt just do nothing, the Gerson Treatment includes organic coffee/caffine enamas, that suppose to cleanse colon and detox your liver, in turn boost you immune system. You might want to google it. Naturally it involves a well balanced diet. Lots of fruit and veggies, power juices. My tumor is not as big as yours, only 0.2cm, which is (2mm). I also had some micro-invasive foci that were all less than 1mm. My MO recommend chem an herceptin due to the cancer cells are not responsive to hormone therapy. Because my invasive tumor are in the grey area not to do chemo, due to they were so small, he consulted with other MOs and they all agreed. Told me he did not want me to come up with liver cancer 10 years down the road. Due to the liver filters our blood and there can be cancer cells in the blood stream looking to attach to something to grow. Yes, the decision was mine to accept the recommendation and I accepted. Maybe the hormone therapy will be enough for you. You should inquire with another MO. don't just through it under the bus, because cancer is nothing to play with. I live in Gulfport,Ms; however, is recieving cancer treatment through Palo Alto Medical Foundation. Surgery at Stanford University Cancer Center. all my margins were clear and no lymph node involment. Good luck to you and God bless.

Anonymous · July 2014

I dropped out after one treatment of ACT. I was dx 9.5 years ago and never provided with a lot of the data that patients get today. We're slowly being treated like we have enough of a brain to understand and be involved in treatment decisions. Each doctor has only the knowledge that s/he obtained from their experience, which is considerable, of course, but which does not always match what another doctor in the same field might have encountered. So we are often treated like we don't need to know everything; we are symbolically "patted on the head."

You will see my dx by my signature. I never got an oncotype score or Her2 status (that I know of). I only know my grade because I requested copies of my reports (we can't absorb everything that is said in our oncology meetings unless we can review it later. Some (many?) record the meeting for that purpose). So I have no idea what the "numbers" were as far as a decision to have chemo with my stage 1 dx. I wasn't given a choice (that I know of). Now that I think back, I recall this onc asking "What made you decide to have a mastectomy instead of a lumpectomy"? I said "numbers/percentages...I play the best odds." He went on to explain in great detail what chemo would do for me numerically. Perhaps he was trying to convince me to have it. I just thought he was saying "this is why you will have it."

I did not do any more research until after my first chemo treatment. It was so difficult to manage alone (I have an extremely weak stomach, and vomited every half hour for 24 hours). I could barely get out of bed, didn't eat more than 100 calories a day for 3-4 days, could only take a small amount of sherbet or ice-milk. I had a child and a dog to care for (single mom). It stopped my period immediately (and I never had it again my entire life). Anything that strong is scary. I felt like I had dirty black used motor oil in my veins. My sister said "Of course it's nasty, they're trying to kill almost everything in you without killing you entirely." Another friend said "I lost a friend to leukemia that he got from his chemo for another cancer." I finally thought-what the heck? Should I be doing this with such a great prognosis already?

I called my onc's office and said I didn't think I wanted to keep going. The person who answered the phone was so nasty (I don't handle that well-I feel like a child when I'm dealing with a doctor's office-I have no idea why). So she just said "Fine then, if you don't want to do chemo then there is nothing else we can do for you." Exact quote. I was amazed. I said "But, shouldn't I have an appt. to talk to the doctor about it, aren't there other treatments like Tamoxifen?" (which I'd heard about in my research only). She said "Well, do you want to take Tamoxifen"? (as if I had to decide yes before she'd set an appointment for me). I said "I don't know; shouldn't I talk to him about it"? She said "You let me know if you decide." (or something like that. I forget the final sentence).

I was astounded. I had no further treatment until I saw my diagnostic doc again for my next mammo. She was aghast. "But...you have to be seeing an oncologist...I'll get you another name." And she did and the rest was great. This new onc said "chemo was probably not that important for you, Tamoxifen is more important." So I did 5 years of Tamoxifen and Aromasin and they were no picnic either. And, yes, I did lose my hair (started at the county fair, which is this week, 9 years ago) from only one ACT treatment. That dang red devil.

My acquaintances, when they heard I'd quit, were "saucer-eyed." "But, you have to do chemo" (of course they had no idea...it was knee-jerk). I'm sick of the famous "do all you can to fight it," and "tough it out" platitudes. I did not quit chemo because I wasn't tough enough to manage the side effects. I quit chemo because it did not seem to be a reasonable risk/benefit ratio (in my situation). I vowed I would never regret it. If the cancer came back or metastasized...I would never say "Oh, I wish I'd done that chemo."

I have a lot of minor health issues now that have made quality of life decrease. I'll never know what came from the chemo, the Tamoxifen or Aromasin, normal aging, genes, etc. So why worry about spilt milk? I am watching some newly discovered lung nodules for growth right now, which I feel will turn out to be "nothing." If they do not, I will never once regret my decision. I was stage 1 (1.8 cm tumor, but a second tumor located with MRI the day before the surgery). I opted for a mastectomy and was told that, even though the 2nd tumor was close to the chest wall, the surgeon felt she got deep and clean margins. I was grade 2 and had no lymph node involvement. I only had a 2-5% ish chance of recurrence anyway. Risking lifelong side effects to decrease that by another 1-2% seemed numerically silly. I felt I could almost just as easily go through the chemo and then still get a recurrence. I've never looked back.

So, there is a long story because I doubt you'll get a lot of people who quit after one treatment. I hope that your decision is the right one for you, and wish you all the best for a long and happy life with that beautiful family in your avatar.

Brenda

tangandchris · July 2014

We all have to do what we think is best. I completed my chemo, but I'll tell you I wanted to quit after each one. My 4th tx was the worst and I cried and cried to dh telling him I didn't want to do it anymore. I truly don't know how I got thru it.

It IS hard knowing what is what when dealing with MO's sometimes. I have felt like from the beginning that alot of this stuff is a crap-shoot at best and MO is only doing what they think is best in their judgement.

I agree though, MOM-are you going to be doing any hormone tx's or anything like that?

MomtoIrishQuads · July 2014

Tanga and Mom,

Oh yes - I'll be doing the AI - hormone suppressants. The reason I even did chemo is that my former oncologist told me that chemo would be an "insurance policy" if I didn't tolerate the AIs for 10 years. I'm hoping for the best with them - but this time, I know from much reading here to try another type if there are side effects - I see that many women switch from one to the other and do better. I see this as the most important thing to do since estrogen fuels the darn stuff. No fuel - no growth.

I am also planning to work on the glut of estrogen in my body through other ways - losing weight is #1. I understand that's probably the most important thing to do besides taking Vitamin D. I'm planning to pay much more attention to what I put in my mouth - and doing things to take the phytoestrogens out of my body (e.g. through plastics and hormone pumped animal products).

Brenda - like you, I see it as a cost-benefit analysis. Subjecting my body to something that just doesn't feel natural is a MUCH bigger deal than I ever expected. My husband saw me and described the treatment as "barbaric" - I think he has hit the nail on the head.

I wonder (I might as well wonder) if my one treatment will have any effect or be a detriment (someone told me that sometimes chemo "wake up" the less aggressive cells. I hope I didn't wake any up and if I did, that they were shot down.

In this case - I'm also listening to my body - which is something that I've been striving to do for years.

Deb

MomtoIrishQuads · July 2014

Brenda - oh, btw, I called today to make an appt. with my MO to discuss discontinuing chemo (I've already decided and unless she gave me a compelling reason to continue, it's over). The scheduler said the earlier I could get in to see her is 3 weeks from now. I kind of laughed because that's a week after my next treatment is supposed to start. So - I guess I won't be getting her opinion. Then - a triage nurse called me back - I started to talk to her, and we got cut off. She never called me back. I feel like just a meaningless number to them. I so miss my old doctors in CA. Time to find another oncologist.

Deb

wrenn · July 2014

i quit after the first dose because i developed diverticulitis. The oncologist agreed that it was a good idea to stop. He told me to try a low fat diet. I am 7 months out from that one treatment and my hair os finally starting to grow (about an inch now). I regret having had that treatment becuase i have horrible neuropathy in my hands, feet and legs and i have problems with digestion and infections. I still feel poisoned. I recently had post menopausal bleeding and cramps. I am 67.

Even though my odds were supposedly better with chemo (triple neg) it was not worth it.

For the percentage you were given i wouldn't have done the first. I think for some people side effects are either not as bad or diminished quality of life is ok if they get to be with their children longer.

AlaskaAngel · July 2014

Irish Deb: There is no absolute right or wrong about it. I haven't seen anything to indicate that stopping cheers the leftover buggers, and the only concept that comes to mind is that if one has a mixture of different bc cells with some being gangbusters and others being slower-growing, the gangbusters that were in the process of dividing at the time you hit them with chemo got nailed, while any slower-growing ones tend to be less often or less affected. They do multiple treatments to catch more of the faster-dividing ones that didn't happen to be dividing at the time of any treatments you've completed. The therapies add to each other, it isn't as if you never did any chemo -- even if there is no clear estimate as to just how much effect a single treatment may have had. Hope that helps. I completed my chemo x 6 but I too vomited, with severe projectile vomiting for about 24 hours afterward, even with medications available at the time. I had to stop on the way home from treatments and vomit by the side of the road more than once, and then drive on.

Brenda: THANK YOU. I too was diagnosed and treated like an idiot, which I wasn't. What also is very annoying about it to me is that MY health care testing for HER2 was paid for not by the people "treating" me, but by ME and MY health care insurance, yet I was never told anything about HER2 at time of diagnosis in 2002. I only found out by requesting my records much later -- almost 2 years after completion of chemo. In fairness to the present, I recognize that there is more explanation nowadays for patients, but IMHO, the gangbuster approach along with provider dominance is still a barrier to better health care.

Wrenn, the return of menses surprises me and I hope you have access to someone with genuinely significant experience who can share what info there might be about it with you.

Lastly.... my personal take also is to give strong consideration to whether or not adding in the use of metformin might help, depending on your metabolic condition, since it is considered to deal with stem cells, whereas chemo does not.

A.A.

Anonymous · July 2014

Mom

I'm curious about your comment on vitamin D and "getting the estrogen out." I recall doing online research and feeling I had every symptoms of excess estrogen. And I CRAVED the sun, but never got it.

Recently, due to migraines that started about 6 months after stopping Tamoxifen/Aromasin, I developed migraines with "aura" (cognitive loss, visual disturbances, numbness, etc.). They've been increasing for years and have been debilitating to the point where I closed my business of 20 years. I have no job and no income. A blood test showed a few irregularities, one of which was a vitamin D level of 15 (should be 30-100). I looked at a test a couple of years ago when they started, and it was 35 (on the low end of normal). I started taking 10,000 IU per day (doc's orders), and my headaches have eased (the headache part, for me, is not the worst part of my episodes). But the visual aura has all but stopped! I had 1-3 per day, and I've just today had my first aura in about 2-3 weeks. And it happened VERY quickly, whereas my ramping up came on slowly. I KNOW these migraines have some hormonal trigger component (long story and I talk too much anyway). After starting the vitamin D, I'm having hot flashes again!!! Hmmmm...

As for doctors' offices and their front office staff--It is SO frustrating. I have a great PCP who belongs to a practice that tries to get everyone seen in 1-2 days. Like in the "old days." I love it. Of course, now that medicine is so specialized and so extreme, it's hard to get into any other type of doctor. And the person who answers the phone/schedules, at $10-$15 an hour and possibly with no medical background, might think what she would say to solve a problem if her own mother was calling.

After I left the oncology office that wasn't patient-oriented...I got a fabulous one! The front office was ... eh ... not great. But my onc's nurse was THE BEST, and my onc was good too. It's so nice to know that, if this beast rears its ugly head again-I know exactly where I'll go to get help fighting it.

MomtoIrishQuads · July 2014

WhatNow,

Interestingly, I feel much better now that my Vitamin D level is up to 95 (vs. 20 - which I yelled at my primary care doc for letting go....because it fell "in the normal zone" - I told them - that's NOT normal for a cancer survivor - you idiots!). I was so fatigued before taking Vitamin D again - might have been my thyroid which was also out of whack - hard to say. But interestingly - like you, my hot flashes returned (not that they ever were that bad). Hmmmm....wonder why that is? Anyway - I've heard that Vit D is probably one of the biggest thing you can do to prevent cancer - putting diet and exercise to one side.

There are way to decrease estrogen splattered all over the Internet - I believe that Dr. Block also talks about it in his book "Life Over Cancer" - things like taking DIM (on my list to get). Estrogen lives in fat so that's a biggie (no pun intended). My ice cream and chocolate addiction has kind of gotten me into a pickle - although I haven't had much of that in the last 2 weeks since chemo so maybe my taste buds have died. Let's hope.....

Mom to Irish/Deb

wrenn · July 2014

Is your primary care doctor still your doctor after you yelling and calling her/him an idiot? Doctors are scarce here so that would not go over well.

Martessa2553 · August 2014

I opted out for Chemo. I was diagnosed Stage 1 ER+ a year ago and started Arimidex Dec. 2013. I have to add that I chose a Masectomy because the Surgeon that had performed the wire-directed biopsy had already removed too much of my small breast and she was still not done with the full removal of the cancer. My Onco informed me that the surgeon would have to remove move of my breast living me with mostly nothing of it. My Onco was insisting that I do Chemo, but I did not agree with her, and she decided to do the Onco type DX test to find out the level of recurrence of the cancer.

Meow13 · August 2014

I chose no chemo even though oncodx was 34. My surgeon and his nurses had me so upset. They told me I really should be brave and do it. After all I did so well recovering from my mastectomy. He wanted me to cancel my DIEP surgery it took 4 months out to get scheduled. I was in the twilight zone. Poison now they want me to take poison and risk damage to my body. I was in the best of health just had cancer. No way I need my immune system working for me. Sorry for the rant but I want better treatment we shouldn't have to be cut up and poisoned.

Any Chemo "Drop Outs"?

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