Terrifying stories
Comments
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Hi Sisters, I'll weigh in not to scare anyone but to share my experience. You can see my details in my tag below. My treatment journey should have been straightforward. I was post-meno and was given Tamox for 5 years but my journey derailed. From the beginning Tamox did not sit well with my body. Terrifying mental health effects, depression/anxiety/panic but the worst was yet to come. Five months in my belly swelled overnight, I turned yellow, my nose was bleeding I was profoundly confused (didn't know my own home) and my liver was failing. I had acute onset stage 4 cirrhosis due to a hepatotoxic response to Tamoxifen. Yup. I was told I had 3 years max to live without a transplant. Hmmmm. But with a history of cancer you can't get a cadaver liver (in Canada anyway) so that meant a live liver transplant. My sons were both a match but I wasn't up for that option. The cause (but they still don't know the full reason it happens to about 2.8% of patients) is 1. I had a fatty liver 2. Tamoxifen is a known hepatotoxin 3. Idiopathic. We just don't know. Why do 5% of women on Tamoxifen get uterine cancer and others not? But we do know that a fatty liver is an issue. You can be thin btw and have a fatty liver (me). More and more women in North America are going into BC with NAFLD (non-alcoholic fatty liver disease) and not knowing they have it nor being checked. When you are on Tamoxifen have your liver enzymes checked monthly for 6 months. Also request a liver ultrasound. That will give you a basis of knowledge to see if you can tolerate Tamoxifen or at least see if you should consider another option.
As for me, I was in intensive care 9 weeks. Due to the strictest of lifestyles I am healing. Just as they don't know why it happens to some and not others, there is not a great deal of research on outcomes for people like me. What takes a dedicated drinker 40 years to do, I managed in 5 months. Not bad for a non-drinker/smoker. Well, I have healed (sort of). Cirrhosis is generally understood as irreversible but acute onset due to a medication is not well understood. There are 4 stages of cirrhosis and I was stage 4 with a MELD score of 27 so almost too sick to face a transplant anyway. But I fought and I endured. So the scales goes Fibrosis 1-4 then you go into Cirrhosis 1-4. Through steadfast determination and compliance to diet modifications I am in Fibrosis 3. So it can happen.
I am now on Letrozole as it is considered to be the least hepatotoxic of the options and I hate it. Bone pain mostly and brain fog huge. I am an academic and having brain fog is so insulting. Everyday I say 'this is the last pill I take' but I take another as it reduces the risk for me by 2%. I'm at a 12% risk (using that UK predictor tool online and discussions with my oncologist). So 10% feels better. So that's my story. Listen to your inner voice and be your own advocate. I wish I had been more demanding when Tamoxifen was running its game through my body. I knew something wasn't right but was assured by the nurse 'it's just the side effects give it 6 months and they should settle.' They didn't. And it nearly killed me.
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On Letrozole for 6 months, no side effects other than some hot flashes, which my MO recommended a natural remedy called Relizen by Bonafide - it's mail order.
Take a deep breath, a lot of us worried about SEs and are doing just fine.
One day at a time!0 -
Canadaliz - Thanks so much for posting your story. While yours is an outlier, it is good that we hear of these events. When we are told not to worry, because of low percentages of bad things happening, I always think, "Well if you're the one that is that low percentage, there's a whole lot to worry about". I think it is important and I wish they would be frank with us about the fact that while real serious things might not happen very often, when they do happen it can be disastrous. We have to weigh the reality of these low percentage problems when we decide what to do. When doctors dismiss concerns with "Oh it's less than 5% who get that", etc., I get real bothered. I take Letrozole too, and agree that the brain fog is out of this world! I really hope things improve for you and that perhaps you'll find a match that is not one of your children.
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jewelweed - My surgeon told me I had "good guy cancer" which meant it could be treated with a pill, then I had it in my nodes and here came chemo and rads. I've been taking the hormone blocker Arimidex for 7 years. When I first started, it was told 5 years. To make a long story short, a study out there says it is better to go 7 or 10, my MO thinks it is best I take them another 3 years for the total of 10. The first 5 I never had physical issues as some people have, I still don't. It does affect your bone mass and I've been on Prollia on and off which helped a lot. There is also fosamax that is a pill you can take to keep your bone mass. It's only been the last two years that I've seen an uptick in my blood pressure, and a recent blood panel by my PCP showed elevated cholesterol, which I've never had. I'm a little overweight so I am on a diet and should lose the weight by the 3 month check up, so we'll see what my cholesterol level is then.
My thoughts are that the trade off was totally worth it. Now for you, you don't know if you have node involvement, so I would wait to see if you do. If you don't, you'll most likely only be on them for 5 years, before the issues you're most afraid of might kick in. Just going by my experience though.
I DID fight back with my MO about taking them another 3 years because I'll need to take the prolia shot in the treatment room every visit, which continues to be every 6 months instead of 12. Still, I don't want to regret not taking all the treatment my MO believes I should have to prevent a recurrence.
Before I was diagnosed, I also never had ANY health issues and I was my ideal weight. The docs loved me because I was going to be easy to treat. I still feel VERY healthy
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jewelweed
It sounds like we have the same onco. I too was told how very lucky I am. Lumpectomy with oncoplasty and PBRT. And then follow this with that lovely little pill. I too was more concerned about that little pill. I did, however, start it 2 weeks ago and so far have not had any major SE. I have however had fatigue and today I really had brain fog. I guess that is what it is. I felt like I could not get a thought together at all but I was extremely tired so it may have been that contributing. I am just going to keep trying to push through as long as it doesnot get worse. I was really worried about the joint and muscle pain because I already have OA in multiple joints but so far I don’t see an increase. I do consider myself very blessed to have been caught early and hopefully this 5 years will go by fast. Blessings to all!!!
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I’m in the same boat and old the Rad doctor don’t want radiation don’t want chance of scarred lung, heart issues cause mine is left breast. Stage 1 removed it clear margins and clean lymph nodes. So I told him I need to wait haven’t been to first oncologist appointment which is next Thursday. But I want no chemo or pills. I’m gonna see what they have to say.
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I am in your exact same place. I have hormone positive her 2 negative bc and went through the lumpectomy and radiation easily and with flying colors. But my first aromatase inhibitor trial was horrible as I had every side effect possible so they took me off and put me on another generic exemestane (brand name aromasin) which went well for almost a month then I had a severe depressive disorder. So they took me off of that and at my request they put me on the brand Aromasin which hypothetically should be the same as exemestane generic but totally the opposite. I have had fatigue which is the only notable side effect and the fatigue is managed well by drinking tons of water and exercising which my onco insisted on. Really great advice. I'll keep you updated and you keep us updated. I think we all need to support each others choices as well as participate in the solution by sharing our experiences in a meaningful and truthful way!
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What did they say and how did you respond? Just curious as I've been close to telling my MD that I'm going to stop the AI's but haven't had the courage yet! And, for obvious reasons of wanting to live I may try to continue even with the SE's.
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Everyone is different. I know someone who sailed through 10 years of Tamoxifen. For me the drug was problematic and I was switched to Letrozole. At about the time that I needed to switch meds, I also had to switch oncologists and have a complete hysterectomy. The new MO has told me that I get credit for the 18 months of tamoxifen, so that's good news.
I also feel a lot better after the hysterectomy and wish I hadn't waited so long for that.
Letrozole is a little better for me than Tamoxifen, and I'm doing what I can to mitigate the side effects. Exercise (walking a mile a day), prilosec (for reflux), Aleve for joint pain, and a few other lifestyle changes all make the Letrozole doable. My MO says that without the AI my risk of distant recurrence is close to 20%. So although my tumor was small and caught early, it was aggressive (grade 3). That is what is driving my treatment.0 -
I just finished 5 years exemestane and had very little bone loss. I did have joint pain when I woke up or sat for long periods. I run or walk almost everyday, eat well and take vitamin d with calcium supps daily, so I think all of that helps keep your bones dense. Activity, I mean daily activity, will keep the aches away.
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This is encouraging because I am active. Did you also take calcium? Or did you just eat well? I'm torn on whether I should do that-- I have heard mixed stories on how much good it does, and I don't want to damage my arteries.
Thanks!
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@ Jewelweed and everyone else contemplating hormonal therapy
I think if you are so conflicted from the start you need to hear the rationale and assessment of your individual cases from MOs. Go for second and third opinions if needed. I don’t think reading anecdotal evidence about how terrible or good it was for someone should ever be a decisive factor.
Beesie recently posted some stats on another thread where the same topic was discussed, just search on this forum for recent posts by Beesie.
From what I see on these forums, folks diagnosed at higher stages usually have fewer questions whereas those at stage 1 are more hesitant which makes sense. I am a proponent of working with your docs vs relying more on various calculators and websites evidence.
I have been on Anastrozole for almost eight years and it didn’t stop me from working full-time, being active, getting married for asecond time, etc. Would I look a few years younger maybe if I didn’t have to take it? Maybe, but I would likely be stage IV without it by now and that’s what I am trying to avoid.
Best to all
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Hi Jewelweed. Yes Vitamin D with Calcium once a day. My MO told me my risk of recurrence was 10% to 20%, and the AI would cut that in half. That was enough for me to take it. I had a bso, too, so talk about estrogen deprived.......and I came out of 5 years of AI ok:) Hey, one piece of advice, start using a moisturizer down there when you start taking the AI. See the thread "recurrent infections." All the estrogen deprivation will causes some dryness and atrophy unless you stay on top of that early:) I didn't have any hot flashes, and still don't now that I am off the AI's. Didn't have any when I was perimenopausal or after the bso, either. They told me exercise and healthy diet is probably why. Be sure to let your doctors know what herbs and supps you are taking, as some things can effect how AI works. I know grapefruit is a no no? Soy, too.
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Canadaliz oh my..thank you for sharing. How scary. I am confused as to why they started you on Taxoxifen if you were post-meno? That is usually only given to women not in menopause.Am I missing something? If I am, sorry:)
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KateHanni I understand because I almost quit taking exemestane two years in when I gained 20 lbs and kept getting utis. But I did not. The utis stopped, thats another story lol. Hang in there:)
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Obviously I am working with my doctor's on this. I also find it useful to talk to others in this forum, and I'm well aware of the range of experiences.
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Thanks! I'm still trying to wrap my head around what's on the no-no list-- I gave up unfermented soy a long time ago though. I'm a health nut of many years, so I'm hoping this works in my favor.
Talked to my doctor today and her breakdown was that 1/3 of patients experience no symptoms or just trivial symptoms; 1/3 experience mild symptoms that need a little management; and 1/3 crash into the more onerous symptoms. No idea where I will fall until I try.
My other big news, and this is resolved yet: I might be able to skip radiation entirely and go straight to AI!
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That is great news, Jewelweed.
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