Post chemo / zoladex & letrazole side effects (hoping for some hope - please!)
Hello ladies, I finished 6 months of chemo (doxy then paclitaxcel) recently and then started on zoladex and letrazole last week. I am feeling VERY anxious all the time, very tired and flat - not like "myself" at all and really pretty non-functional. I can barely make a cup of tea and seem to just stare at walls when I'm home alone (often). I managed surgery and 6 months of chemo basically alone and unsupported and I coped. Now that I'm closer to family I seem to have really mentally crashed. Motivation is zero and the smallest things are an effort. I was more functional than this DURING chemo... Is this normal post chemo? A crash? Or is it the new hormone suppressants? Will it pass? Can anyone PLEASE offer me any words of wisdom or hope around recovering from chemo and the adjustment times to the hormone suppressants? Wishing you all so well. SDM.
TERRIFIED of Treatment
I’m not sure I can convey in writing how terrified I am I’m not sure there is a word to describe it the worry I feel is debilitating, I already suffer from anxiety and this is just exasperating it, i was diagnosed about a month ago and have had a Lumpectomy with good results margins were clear and lymph nodes were clear, my cancer is triple negative and they are still wanting me to have chemo and radiation. The plan is 12 weekly doses of chemo then about 15-20 treatments of radiation along with Herceptin every 3 weeks for a year. I am supposed to go to Hospital on Tuesday for Echocardiogram, Port Insertion and my first chemo. Everday for the last two weeks I have woken up at 6am in what I think is a panic attack I have tingles all over my body and shaking and I don’t want to get out of bed I’m at a point where I don’t think I’m going to be able to get myself to the hospital on Tuesday, and on top of all this I live in Melbourne so we have COVID to deal with which means no one can come to hospital with me I have to do this alone. I am terrified of having the port put in and the thought of it being in my body for so long is terrifying to me I am also completely terrified of the chemo and all the worry it will cause me between treatments having to monitor temperature etc etc will be so stressful for me. I have tried conveying this to various people (Doctors, Family, Psycologist) and all they say is you have to do this and take one step at a time, I feel like no one is really grasping how terrified I am and no one is helping me with the mental side of this, am I the only one that feels this way please HELP me as I don’t think I can mentally survive this and am seriously considering not going on Tuesday.
Alternatives to Zoladex and Tamoxifan? & Genetic Testing for Drug Metabolism
Hi all, Who has had Genetic Testing for Drug Metabolism? I have and it has been spot on with understanding why over the years I have had sooo many side effects with different drugs. At this stage the testing is not covering every medication, but it is improving it's data base the more people do the test. It has been helpful when I have had my lumpectomy, my anesthetist tailor made my drug regime and I had no horrible side effects from the sedation or pain killers. I was also able to see that Tamoxifen is a no go for me. I was interested to see why, so I rang the genetic testing company to see why it came up as Red when I typed it in on my report. They told me that I may or may not have side effects, but I will not metabolise the drug to make the effective ingredient for it to work. I have told my onlocolgist this, and she is insisting I try it. I had severe side effects with Zoladex, the physical, while crappy, I could put up with. But the mental side effects were debilitating; Severe Depression, Anger, Irrationality etc, hence we did not start the aromatse inhibitors. My oncologist used a tool on the web (I think this has be spoken about in another post) and said that if I stopped taking the Zoladex that my 10 year survial rate would decrease by 2.7%. I was willing to take those odds, and we both agreed to stop the Zoladex. But my last visit, she wants me to start the Tamoxifen, because, some women do not have any troubles with it. :/ Again I do not want to, because 1. my genetic test and the company say that studies show that my genetic make up will not metabolize the drug to make the effective ingreadient; and 2. I do not want to add to the horrid mental side effects that I am experiencing ( A little less now that I am not on Zoledex) but still life disruptive. Because of my Genetic make up, I can't take nearly all of the antidpressents used to treat the side effects either. Im about ready to find another oncologist that will listen. What other alternatives to Tamoxifen are there? Other than Zoladex and Aromatase Inhibitors? Is anyone out there not taking anything at all? Thankyou for letting me rant, xo Heres a link to the genetic testing I had done if anyone is interested. https://www.mydna.life/medication/
Arimidex. They’re kidding, right?My surgeon prescribed Arimidex increase
I’m 62 and was diagnosed with Stage 1 breast cancer in late March this year. I feel incredibly lucky not to have received this diagnosis as a young woman, as do many of you are. I also feel lucky that it was detected early and 2 breast preserving operations and 20 sessions of radiotherapy later, I was feeling relatively normal again. I’d been on HRT for 12 years (12 good years I don’t regret for one second), but as my cancer was hormone receptor positive I had to stop. I was really worried about hot flushes but Effexor really helped to reduce the frequency and intensity. I think the anti-depressant aspect had a positive effect on me too. I was really feeling quite chipper. My surgeon prescribed me Arimidex and said if I take it for 5 years, my long term survival prospects are better. I set myself a start date of 1 September and steeled myself for a resumption of debilitating hot flushes. Four weeks in, there was some but not a huge increase and I was thinking “Ok. This isn’t too bad. I can do this”. Then the arthralgia kicked in. I already suffer from arthritis in my right hip and knee, but a long acting anti-inflammatory I take had managed that perfectly well. Now, the pain is constant and keeps me awake half the night. It’s spread to other joints, including my right thumb which is “locked” every morning when I first get up. I read a couple of discussions on BCNA and started taking Panadol Osteo. Nothing. I feel almost crippled. Everything hurts when I get up from sitting or get out of the car after driving anywhere. I hobble like someone aged 92, not 62. I’m so fatigued I can barely gather the energy to drive the car and the most awful gloom has settled over me. I don’t see my surgeon until December, and being the sole practitioner of a small law firm, I have to work Monday to Friday and I have to be on the ball. I stopped taking the Arimidex 5 weeks in (last Saturday) and yesterday I started to feel well again and last night was my first pain-free sleep for about a week. I’m stressed about this because I want to do what I can to survive this psycho disease, but I really can’t live the next 5 years of my life like I lived the last week on Arimidex. If anyone has any tips or recommendations, remedies, drugs, anything that worked for them so that they could function on Arimidex, I’d be so grateful to hear from them. Alternatively, any good news stories about survivors who didn’t take Arimidex would certainly help me to feel hopeful. I’m pretty much the worst worrier I know, so anything positive would be a huge benefit to me. Thanks for listening. Claire
Weeping Breast
Hello Ladies, I hoping someone can help me.. I finished my Radiation treatment 2 weeks ago today.. I knew to expect that the burns would probably get worse before they got better and that was fine, But I have now developed a horrible rash which has gone over the tio of my burns, all over my breast, and now spread to my other Breast. I saw my Breast care nurse yesterday and she is at a loss as to what is causeing it, we changed from Jelonet to something else and stopped the sorbeline (which I don't like anyway), to see if I was having a reaction to that... She spoke to my rad onco, he said to try Phenergon and just use solugel, and cortisone cream on the areas that are not broken. I had an appointment to go back tomorrow but after not sleeping much at all, and waking with my dressings, nightie, and sheets wet with fluid, then taking 2 phenergons at 6am, changing all my dressings, and finally falling a sleep, I woke again with dressins soaked.. I have spoken to my nurse she wants me to come back in this afternoon, but my Onco is in a meeting so have to wait. My nurse to photos yesterday and says that yes my breast is swollen also. I cannot stand anything touching me, apart from it weeping and soaking through everything, it feeles like little needles. I don't know if you can get lymphoedema in your breast can you? Has anyone expereinced anything like this? I am so tired from not sleeping and starting to feel very nauseas I hope this all makes senseTaking Letrozole
Hi ladies I need advice.. I have been taking Letrozole since June 18, I was told my menopause symptoms were going to come back with a vengeance.. But having to take this drug as many of us do I thought I can handle it. 4 weeks after taking it I was ok not really any hot flushes to speak of, no night sweats.. Then BOOM omg, as soon as it gets dark it seems, they start, not to bad in the day time.. but more and more the night sweats are getting worse.. also Not sleeping more than 4 hours a night is not helping, i am getting forgetful, and generally pissed off. what can I do? I have made myself a peppermint spritzer bottle that I keep squirting in my face lol, I have made a roller bottle of Sage, lavender, and peppermint to roll on my pressure points, I am at the stage where I just want to stop taking this stuff. I am seeing my GP on Tuesday so I will talk with him, and I still haven't started my Radiation, that starts on the 14th... I don't want to be like this for the next 5 years, I know I very lucky and there are so many out there that are so much worse.. but yeah...... I guess its really getting me down
Struggling with my mood
Saw my oncologist yesterday for the pre-chemo check-up. She started discussing Tamoxifen & Anastrozole with me. I've read up on them before and, while I know some people have no troubles with them, others have a lot. So until I start taking them, I will have dread. Seven years the onc reckons. It's challenging to contemplate seven years of suffering. It's my last chemo on Tuesday. People keep expecting me to be happy but I don't feel happy at all. I am as flat as a tack, sad, and cannot contemplate the future with any pleasure. It all seems so futile. And in between those two phases of treatment is a bi-lateral mastectomy and reconstruction. Daunting. Being slammed into hard menopause sucks. I don't sleep well. Will I ever again? I'm doing everything I can to maximise my chances of life. I presume one day I'll feel better about it, but for now I feel like I'm just going through the motions. I can't get my shoulders down from up round my ears I'm that tense. I'm trying to stay in the moment, but failing, and positivity is completely beyond me. I'm just so tired. I don't want to see anybody, there's hardly anything I want to do. I've got friends coming over today but right now I just wish they weren't. Is it OK to duck out mid-afternoon for a rest? Cried myself to sleep last night. I'm aware that most of us have bouts of self-pity, but this feels different. An absence of good spirits. One day at a time is not working for me at the moment. Sorry for the whinge. Just needed to get it out. Where better than here and all you lovely women.
Reconstruction & Doctors Not Telling Everything
OK heres the update. Saw the boob specialist Fri 3rd & had a mammogram & ultrasound. He told me that the seroma & node that's enlarged hasn't changed & maybe a little smaller. Then saw the plastic surgeon on Wednesday about a reconstruction. They won't do it because of my diabetes & my vascular problems & healing & because it's just too dangerous, they said that they didn't want to kill me. So that's stuffed up a couple of things we were thinking about. As far as the paraplegic issue goes they said that in my case the only way they could do a reconstruction, if they would, is to take muscle & tissue from my back around the shoulder blade & pull that around but that would really affect my mobility or they can leave the muscle & just take the tissue but that would probably affect mobility too. They also looked up the results from Friday & told us that the boob specialist is also watching a node in the right boob but he didn't tell us. We're not happy about that. Then we saw the GP on Friday & were talking about it so he's getting all the results & is going to go through everything with his nurse (who's brilliant) before we see them next week. Then we were talking about the medication (tamoxifan) I've been put on & he told us that it's chemo.The boob specialist didn't tell us that either. I'v also been told by alot of people that it was worse than IV chemo. I'm going to give it a go but if the side effects are as bad as aristozale & letrizole (I know they'e prbably spelt wrong lol) Im not going to stay on it. I can't be bed bound for 10 years. I'm REALLY disappointed about the reconstruction & the other options we were thinking about & not being told about the node & chemo by the boob specialist because he's the one who should have told us that. So I guess we just have to wait & see what happens (I feel like a time bomb). Just another bloody thing to worry about. I hope this all makes sense because I haven't read it through LOL Im sure I'v left out stuff they said, Im just not thinking all that straight atm.
Depression after treatment.
22/04/2017 Had an ECG during the week. The local doctors nurse did a few paper read outs and then I had another one which uploaded direct to the doctors computer and he said on the intercom he was happy with that one and the nurse discharged me without seeing the doctor at all. This was a bit odd as the appointment came out of the blue a year after treatment and I had never had an ECG before. On Friday, I saw my psychiatrist who explained the depression medication he had me on, although it doesn’t react with my Tamoxifen, between the two it can lower heart rate and I needed to be checked. Since I still get morning diarrhea on 10mg of Escitalopram he decided not to increase the dosage at this time. He said it was a good thing the reaction of my body to it as he said it means it’s working. He explained a lot of feelings and incidents were forgotten and suppressed during my cancer battle and over time as the chemo fog lifts I need to come to terms with what I went through. He said it takes time. I do feel much better on the depression meds which are supposed to lift my Serotonin levels in my brain (the happy bit). I am very passive now with no anger but I still cry sometimes just before I fall asleep when I am semi-conscious but with very little short memory recall I have no idea what that’s about.
