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Unable to tolerate tamoxifen.

124

Comments

  • BarredOwl
    BarredOwl Member Posts: 261
    edited February 2017

    Hi Fe_Princess:

    There are different types of recurrence (local, regional, combined loco-regional, and distant), and different time-frames (e.g., 5-year, 10-year, 15-year) in which such recurrence "events" are measured. The type(s) included and the time-frame affect the reported rates. In addition, the composition of the patient population in which rates were measured can also lead to differences in reported rates.

    The first graph in the node-negative (N0) Oncotype report for invasive disease provides information about a specific type of risk, according to Recurrence Score: the 10-year risk of distant recurrence after 5-years Tamoxifen. This information comes from a study of node-negative patients with Stage I or Stage II breast cancer who participated in the NSABP B-14 trial and who were assigned to receive 5-years of tamoxifen.

    BarredOwl

  • fe_princess
    fe_princess Member Posts: 125
    edited February 2017

    Hi BarredOwl, thank you for your response. I am guessing that there is no one percentage of risk then. I wonder why my onco did not explain that to me. She told me if I didn't do 4 rounds of chemo before I moved to Switzerland that I could have a loose cancer cell wreaking havoc in my body. She told me she was confused by my Onco score. Now I am thinking maybe I should have just done it?

  • lisey
    lisey Member Posts: 300
    edited February 2017

    Fe, I have a 20 Oncotype and Chemo would only help me 3%. I imagine yours at 17 would help an even smaller amount. Hormonals are the way to go for low oncotype scores, not chemo. I wouldn't second guess yourself at all.

  • fe_princess
    fe_princess Member Posts: 125
    edited February 2017

    Hi BarredOwl, Thank you for your information. So oncotype only tests for local recurrence?

  • lisey
    lisey Member Posts: 300
    edited February 2017

    Fe, the oncotype tests have two percentages they come with one for a 10 year distant recurrence score, The other for how much chemo will help you. There are two sheets you should have with stats from different studies with your oncotype testing results. Do you have those? Here are mine. You can see that with a 12 score I have a 13% chance of distant recurrence using Tamoxifen alone. Then on the other sheet you can see that Chemo really only helps me 3-4% - so not much. Since you are smaller number than me, your benefit with chemo is even smaller. Look for these sheets.. that will tell you what you need to know.

    image

  • BarredOwl
    BarredOwl Member Posts: 261
    edited February 2017

    Hi Fe_Princess:

    The main benefit of added chemotherapy is to reduce the risk of distant recurrence, and this is the focus of the clinical information in the node-negative report.

    The nature of the recurrence risk information from the study featured in the top graph of the node-negative (N0) report is a "10-year risk of distant recurrence after 5-yrs tamoxifen."

    The graph shows the 10-yr risk of being diagnosed with a distant recurrence (incurable metastatic disease) as a function of Recurrence Score, based on what was observed in a group of patients who were all assigned to receive 5-years of tamoxifen.

    The same clinical correlation information is used regardless of surgical plan.

    BarredOwl

  • cliff
    cliff Member Posts: 86
    edited February 2017

    is it just me, or do a lot of modern medicines have the side effect of "suicidal tendencies? from sleep aids to cancer treatments. even lyrica, for diabetic nerve pain has it, even though if I took something that made my feet stop hurting, I wouldn't be suicidal, that diabetic neuropathy is no fun.

  • lisey
    lisey Member Posts: 300
    edited February 2017

    I'm only 41 and was told emphatically that a 20 score with a stage 1A, is no chemo. This was before my doctor knew of my previous melanoma. I was leaning toward chemo and she said do the mammaprint it will come back low risk - I'll bet you. I took the second text and she was right.

  • lisey
    lisey Member Posts: 300
    edited February 2017

    My second opinion was the Mammaprint. And this board. I had a HUGE thread on the whole ordeal of deciding.

    https://community.breastcancer.org/forum/108/topics/845324?page=5#post_4751383

  • lisey
    lisey Member Posts: 300
    edited February 2017

    yup. there is a cost associated with those 2nd and 3rd opinions on boards - plus they eat in a lot of time. You want to have your chemo within 3 months of your surgery, so time is really important. I didn't want to wait - it was hard enough waiting for the mammaprint to come back as it put me very close to the 3 month cut off.

  • lisey
    lisey Member Posts: 300
    edited February 2017

    Here's the article about getting this decided sooner rather than later: You really shouldn't have chemo later than a few months after diagnosis.
    http://www.ascopost.com/issues/may-10-2016/improved-survival-with-shorter-delays-between-diagnosis-and-surgery-and-before-initiating-adjuvant-chemotherapy/

  • lisey
    lisey Member Posts: 300
    edited February 2017

    Studies have shown that women who wait longer than 90 days for chemo simply have a worse outcome. "Patients treated 91 or more days from surgery had a 34% increase in the risk of death (hazard ratio [HR], 1.34; 95% CI, 1.15–1.57) and a 27% increase in the risk of breast cancer death." It makes sense to me, the longer you wait after being diagnosed, especially with the potential that the biopsy or surgery can actually help spread the cancer cells... getting chemo right away would stop that from spreading to distant tissues to hide from chemo. Chemo doesn't kill all the cancer cells, so the more time it has to escape and hunker down the greater the odds of spread. My radiologist told me there is a small chance when you needle biopsy the tumor, you allow cells to escape - but the benefits of biopsy outweigh the risks (not sure I agree.. I wish there was another option like a blood test).. So once you get diagnosed, you get medical procedures that could spread the microscopic cells and thus starts that clock ticking.

  • lisey
    lisey Member Posts: 300
    edited February 2017

    Amapola36: "Editing to add that before November they said if Oncotype was low (<18) No chemo. However, in December after something or other in San Antonio and a case study MSKCC is doing on younger patients (<45) they said that a score above 11 meant chemo for my age group, specially bc I have a .7mm micromet. What MO says is that they think low Oncotypes are not always accurate for younger women. I was seriously bummed about that and it scares me, but what can one do? Doing chemo to better my odds, but this is all a crapshoot... Again, this is all for me and my case and everyone is different, have different MOs different hospitals etc."

    Can you post any time of link or reference for this? I never heard that and have been following the studies coming out of the conference.

  • lisey
    lisey Member Posts: 300
    edited February 2017

    Here is a list of all the talks given in San Antonio this year. not a word about a change of Oncotype scores for younger women. I'd like a link or some type of documentation because that would have been huge news.


    http://www.ascopost.com/Meetings/?m=2016%20San%20A...


  • gardengypsy
    gardengypsy Member Posts: 499
    edited February 2017

    Dana Farber told me that they don't do an Oncotype test if they have already decided to do chemo. My tumor was large and aggressive (stage 3) and there was no reason to do that test.

    I just thought I'd put that out there if that applies to anyone to anyone like me.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited February 2017

    Is this thread still about not being able to tolerate Tamoxifen?

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
    edited February 2017

    Amapola36, good for you taking the bull by the horns. Several years ago, I had a friend who was thirty and diagnosed with early stage breast cancer. She did a mastectomy and a rebuild, did CHEMO because of her age and the responsiveness of her cancer to chemo, and she is doing absolutely terrific today. Had they not done chemo, her doctors were less optimistic about her longevity. I do research every day, am an educated researcher and due diligence officer. I know the studies of which you speak regarding the lower oncotype and chemo for younger women. Your health is not worth gambling on. I am so fortunate to have the best doctors, from Wash U, University of Southern California and Vanderbilt on my onc and surgery team. If I were younger I would have asked for second, third, etc opinion, from reputable doctors. Congrats on doing your IVF and getting everything you needed done before your treatment.

    I have a tip, for those not tolerating Tamoxifen. I am starting with a 10mg dose, as opposed to the full dose. I plan to work my way up to 20, via the 5mg and 10mg route. And, as I move along in my Tamox treatment, I will keep notes on what my body is telling me, to refer to if needed. Rome was not built in a day. So, I am giving myself permission to ease into a anti hormonal regime. I want to be able to take Tamox for the long term, and I understand that how I begin something can effect my perspective. So far, I have taken it at about 3 to 4pm, and just go on about my day.

  • dtad
    dtad Member Posts: 771
    edited February 2017

    cliff...interesting comment. I actually became suicidal from Topimax which is a drug to treat my neuropathy. It took several months for docs to figure it out! That was 8 years ago. Now there is a black box label on it, but it was too late from. Docs never warned me. That is why Im so concerned about docs being upfront about potential SEs of any meds!

  • RoseBowl16
    RoseBowl16 Member Posts: 6
    edited April 2017

    I never asked anyone about side effects before starting tamoxifen because I didn't want to influence myself when I took it. After one month I started feeling very anxious and had insomnia, moodiness, aches and pains in my joints so I started searching online. In all honesty, I was distraught to see these were possible SE of tamoxifen. I wanted to take it! But I felt horrible! After stopping for a few days I immediately felt better. I am seeing my Oncologist tomorrow to discuss this because I don't want cancer again. I am jealous of people who have no SE and those saying they had no SE should feel blessed. A bit of understanding and sympathy towards those of us who want nothing more than to do the "right thing" and not get cancer again, but are miserable would be kind as a human being. Each of us is an individual and our bodies are alldifferent. Good luck to everyone.

  • dtad
    dtad Member Posts: 771
    edited April 2017

    RoseBowl16....so sorry you are suffering. I agree there is a lack of sympathy for those that cannot tolerate anti hormone treatment. Just because one cannot tolerate it doesn't mean they do not wish they could! We all need to support each other and speak up for better treatment options!

  • fe_princess
    fe_princess Member Posts: 125
    edited April 2017

    Hi Rosebowl16,

    I can totally relate. I took it for five weeks and not only did my knees, hips and elbows hurt but I felt suicidal. The last thing I want to come back is cancer but I have to have a quality of life too. Do not be hard on yourself. You tried it and it does not work. I'm glad you will see your oncologist. I am interested in what they will say. We are the masters of our own bodies, so don't and medical professionals or people bully you. Hang in there xoxo

  • nancy2581
    nancy2581 Member Posts: 408
    edited April 2017

    I've been on tamoxifen for a little over 2 years now. When I started it I was already on 10mg of Lexapro because I was a mess when I got diagnosed with BC. In January I talked to my family practice doctor about dropping from 10 mg of Lexapro to 5 mg. I did this and all was fine. I then decided to go off Lexapro completely because I didn't think I needed it. WRONG. I turned into a person I didn't know. Crying for no good reason. Angry for no good reason. Sarcastic. I'm sure some of this was caused by going off Lexapro, but I didn't just stop I tapered off. Even my hubby said he thought I should go back on Lexapro. I've been back on for a few weeks and I now believe I need to stay on Lexapro while I am taking Tamoxifen to avoid those awful mood swings.

    Nancy

  • gardengypsy
    gardengypsy Member Posts: 499
    edited April 2017

    Lexapro is supporting me as well. It also has the added benefit of helping alleviate hot flashes.

  • JulieB191186
    JulieB191186 Member Posts: 1
    edited April 2017

    Hi I'm the same with the Tamoxifen It reacted really badly with me from the get go,I was told to come off it after four weeks and a complete meltdown,and to restart after Radiotherapy had finished back on it for five weeks and exactly the same,I have just returned to work part time,I get home and I'm asleep with my coat on for hours,I'm a wreck can't think can't be bothered to speak I'm borderline rude,and exhausted I spoke to my GP last week and he gave me antidepressants,I rang my BC Nurse and although she tried to convince me to stick with them she has agreed for me to come off them until I see Oncology Doc next week,day three of being off them and I feel amazing ,I've had my music blasting cleaned my house from top to toe took my dog for a walk and went shopping,but I've got nagging feeling of guilt in case it comes back,surely there must be something else out there,I'll post how I get in next week,I'm adamant even if it means opting for a double mastectomy if it reduces my risk ,I want to feel human again

  • nancy2581
    nancy2581 Member Posts: 408
    edited April 2017

    Definitely that too gardengypsy.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited April 2017

    I have been on T for approx 10 months. Took a couple months off, still affected by cognitive problems. At this time, executive functioning is the most serious symptom. Neuropsych doc recommended rest, exercise, nutrition, destress, psychotherapy, mindfulness practices. The neuropsych eval pointed to chemo, not anti-hormonals.

  • Girl53
    Girl53 Member Posts: 41
    edited April 2017

    Julie and all: I am grappling with same issues being discussed here....I had absolute meltdown 6 months after starting to take Arimidex, and stopped it. I agreed with MO that I needed to feel better again before retrying with different AI, and that was six months later. On March 25 of this year, I started Aromasin, after having visited a psychiatrist and been given antidepressants and anti-anxiety meds). Now, on April 17, I am starting to feel mood swings come on again/emotional lability. By turns, I am sad and weepy, depressed, afraid, listless, unmotivated, etc.

    When this all started last fall, I couldn't go to work for weeks or follow a recipe...and was too afraid to walk the dog or drive the car. I didn't want to be at home alone. I felt proud of myself if I got out of bed, bathed, and was able to heat some soup up in a pot. I lost more than 20 pounds due to severe anxiety and was literally choking my food down. I couldn't even read a book. When I did return to my part-time work, I tried to avoid interacting with others so they wouldn't see how odd I felt.

    Back to the cancer itself: my tumor was low grade and very small -- 2mm -- and I was node negative. I was told tissue sample was too small for Oncotype test, and that "this is a good problem to have."

    My MO has told me that the absolute benefit of anti-hormonals for me would be small (for example, they would reduce distant recurrence risk from 8 percent to 5 percent, or 6 percent to 3 percent). But, as I understand it, the "index" cancer is not all there is to consider: I also have LCIS, which heightens both-sides risk. And even though BRCA negative, I have family history of BC.

    I want to do everything possible to prevent recurrence, but I don't want to be unpredictably depressed, anxious or unable to function.

    My psychiatrist is upping dosages of meds now that she knows I'm re-experiencing distress. Don't know what to do: keep on this path and see what happens; switch to the third AI, Femara? Ask to try Tamoxifen (I could never tolerate birth control pills)? Or stop the anti-hormonals altogether, take good care of my body, and pray for the best/accept what comes?

    I am so grateful for the good medical care that so many of us in our country can access. But I feel like a mop through a wringer....I want to get to my "new normal" and stay there, rather than having all this tumult continue. Who WOULDN'T be afraid of pills that had rendered them "cuckoo" the first time? WTH? This whole thing has turned into such an ordeal, and one that -- with my personality -- I blame myself for not "managing" better.

    Ladies, thanks so much for letting me vent.


  • sk06
    sk06 Member Posts: 3
    edited May 2017

    Hello, I am new here :) I just thought that I would reply. I had an absolutely HORRIBLE HORRIBLE time on tamoxifen. (as well as 4 other AIs). Tamoxifen was the absolute WORST for me. I got EXTREMELY disoriented, depression, blurry vision, dizziness, vertigo, headaches, extreme fatigue, and extreme muscle weakness. I literally could not function. I went off of it in one week, and refused to stay on it. I will NEVER go back on that horrific drug. It is the devil. (at least to me). Right now I am on the lupron shot only. My Onc, talks about possibly reintroducing AI's down the road, but I am 'wary' cause I didn't do well on them the first time (although, I wasnt on the lupron shot the first time either. ). Dont worry, you aren't the only one with horrible side effects.

  • Tinyfrog
    Tinyfrog Member Posts: 15
    edited May 2017

    To sk06 - How long have you been on the lupron? Do you get the shot every month? At the doctor's office or do you give it to yourself? What kind of side effects have you had on lupron? Do you mind if I ask how old you are? Did you do chemo or radiation? How did those go for you? That's really fascinating that ovarian suppression worked better for you than tamoxifen!

    I completed the 12 weeks of taxol/herceptin April 19. My most uncomfortable side effects from that were migraines and very frequent (every 30 mins) hot flashes, both which have just stopped. I am starting radiation tomorrow, but had a pharmacology consult last week. I was completely shocked to read in the consult notes that one recommendation was to not even pursue an attempt at endocrine therapy because of risk of side effects. The consulting MO used this tool called "Predict" and calculated a 1% absolute risk reduction, but I think he made an error, because I got 6% for 10 years. I was 96% E, stage 1 but multifocal and the Predict result said that endocrine therapy was more important than the chemo i just completed! My HER2 result was on the fence (I had to get 4 additional tests for it), so I don't really consider myself HER2 even though I got the chemo but definitely ER positive.

    Does anyone know of any other tool to calculate risk reduction so I can cross compare?

  • sk06
    sk06 Member Posts: 3
    edited May 2017

    Hello !! :) I have been on Lupron for 8 months now. I am tolerating it 'OK'. Although, I do think that I am starting to feel an 'uptick' in effects with it lately in the past 1 or two months. (more headaches, dizziness, etc). So, we will see. Certainly, nowhere near as debilitating as tamoxifen was for me, that is for sure. I do get the shot every month at the doctor's office. They say that the side effects are symptoms of now being menopause. Side effects such as headaches, muscle weakness, fatigue, etc. I am 37 right now. My diagnosis was when I was 34 years old. I did go through surgery, chemo and radiation 2 years ago. Of course, it was hell, as anyone else that has gone through chemo will tell you, BUT once it was over, and about 6 months went by, I was starting to feel really good, and back to my normal self...............until I had to start the AI's. I seem to be really REALLY sensitive to the AI's. For whatever reason, I have a TERRIBLE time tolerating them. Which I am kind of surprised, considering so many people do fine on them. Anyways, I hope that you are feeling better!! :)

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