Women on Ovarian Suppression + Hormonal Therapy Unite!
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Lilly,
Thanks for sharing your experience. Mine is very similar.🙄 I thought all these symptoms come from menopause.
I think we all are approximately the same age. I am 39 now. I used terms like "young women" as oncologists do for those who got breast cancer before 40.
Does anyone take collagen supplements? I eat collagen bars and ordered Juven (as mellee suggested for wound healing) to prepare for my exchange surgery. I would say my joints feel better with collagen consumption.
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Lilly, Thanks for the so cute bear card!!! I'm doing pretty good. A little tired, a little sore. More mellow, no headache and much less body pains and inflammation. A little zombie like. Hot and cold flashes have been really bad. Last Lupron was July 20 and last Arimidex was 8/22. They gave me a Celebrex before surgery and I took Vicodin Tue, Wed and Thur. So I think I'll wait 2 weeks to start Arimidex again. I want to see how I feel on nothing. I've also had some strange skin rashes, but they started before Lupron, and after chemo. Of course I overdid it this week, went to the beach twice. But relaxing today. Tomorrow is my b-day! Mika Mika, 39 again, lol, just joking, you are much younger than me.
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JRNJ,
It's nice to hear that you are recovering from your surgery and have less symptoms that you had before.
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Well, my appointment with my MO did not go well.
After speaking to her on the phone a month ago and telling her I wanted off the Lupron due to what my colon and rectal surgeon said, she seems a lot colder toward me. She said it was my decision to get off the Lupron, so I didn't get another shot. She really didn't say anything else. I asked her about my recurrence risk with just the Tamoxifen and she was very standoffish and vague. She barely gave me an answer. Shouldn't she know this stuff?
I could tell she did not approve of my decision to go off the Lupron even though I've been in so much pain due to these fissures. She doesn't take my problem seriously and doesn't sympathize at all (which she never has) and just tells me to see a therapist because the mind can cause problems with the body like that. Um, what?. Even though I told her my colon and rectal surgeon said estrogen was vital for healing and good skin health and that I should stop the Lupron, even if just temporarily, she didn't agree and completely dismissed it. Why was I doing so well before I started all this hormone therapy? The fissures I had during chemo immediately healed after that was over and I was fine for months. It doesn't make any sense to me! I started the Tamoxifen and started getting issues and then when it felt like I was healing, I started the Lupron and everything just got worse and worse and the skin down there just kept tearing despite not having any issues with constipation or diarrhea. She just refuses to see the correlation.
She just completely blew me off. When I told her about withdrawals and the horrible acid reflux I've been getting from getting off Remeron (which SHE prescribed to me in the first place and I never wanted to go on), she again was standoffish and just wanted to send me to a gastroenterolgist.
She went over my bone scan and told me I have osteoporosis in the hip. She wanted me on Reclast, which I refused. I don't want any more medications in my body right now while I'm trying to heal from this problem. I don't want to deal with any more side effects. I could tell she and the nurses were not pleased with my decision, but I don't care. I can't handle anything else right now.
She didn't want to discuss anything with me and was in a huge rush.
I even told her I was finally seeing a therapist and she didn't even seem to care much about that either, even though she's been bothering me for months to see one.
All in all, it was not a very comforting appointment. She told me it was my choice to stop taking or to refuse medications as long as I live with the consequences and that was basically it and she told me she'd see me in six months.
I am honestly thinking about switching oncologists. I feel like she just doesn't listen to me and her bedside manner (if there ever was one) has just gotten worse over time. She's a brilliant oncologist, but she has no patience for others and her level of compassion lately has been terrible.
I just wonder if I'll ever get better. : ( I'm so tired of feeling awful all the time.
Sorry for the huge rant, everyone. This year has just been a nightmare for me.
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peridot180,
I am so sorry about your experience with your MO. I would suggest to get second opinion. In the Bay area we have several good options : UC SF, Stanford, PAMF, El Camino hospital.
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peridot180, So sorry you are going through that. I am so frustrated with medical people. Why do they not get it when we are miserable in pain and can't function properly.
After my surgery meds wore off, I started feeling much worse. Surgical healing is fine, but the side effects are getting worse. Massive hot flashes, which I didn't have on lupron, aches and pains throughout my body, and extremely tired all the time. And I have not yet started my Arimidex again. Started to freak out I made a mistake. But the bad headaches I had on lupron and Aromasin are currently gone, but may come back when I start Arimidex again. Is this just healing from the surgery still? Will I ever feel better again, like my old self? or am I now going to suffer without estrogen for the rest of my life?
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I hope you can find a good MO for a second opinion Peridot.
JRNJ, the doctor who performed my ovary removal told me the brain needs several weeks to adjust to the change. I had mine in February and I am doing better now in September. I am happy not to do lupron shots for sure! Please give yourself a break because you have gone through so much in a very short time.
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Thanks Lilly, that's what I needed to hear! I feel a little dizzy and loopy too. My fingers and arms hurt, It hurts to pick up my coffee. If the aches and pains don't go away I'm going to ask to try Celebrex.
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Thanks, everyone. I will definitely be looking for a new MO. I have lost all faith in my current one.
Does anyone know how long it will take to get the Lupron out of my system? I had the 3 month shot about 3 months ago now. I read it could take months to get back to normal. : (
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I think it depends on your body. I read here that some women got their period back very quickly after delays between injections. Don't think about this situation. Been stressed doesn't help. Because of shock, I lost my period for 6 months after I got my diagnosis. Didn't even need Lupron
). Please, spend this time finding your second opinion doctor.
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hello, I’m wondering if anyone else on Lupron started developing numbness or any type of neuropathy after a few years of treatment? I have been on Lupron for 3+ years - doctors think it’s too far out from chemo to be related to that. Also they can’t seem to find ANY other reason why it is happening! I saw that numbness was listed as a rare, but potential side effect of Lupron. Thinking maybe that could be it, especially since I’ve been on it long term now. Wondering is anyone else has any insight. The daily neuropathy is a dreadful new side effect for me. Thanks all.
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What a roller coaster. 2 weeks from ovary removal. First week med withdrawal. Second week I was miserable with pain everywhere and fatique and hot flashes. Last few days feeling better. Took my Arimidex today first time in over 2 weeks, so we'll see what happens. I'm taking every supplement recommended on these boards: calcium, magnesium, zinc, glucosamine, tumeric, flaxseed oil, krill oil and ibuprophen. Seems to be helping. I'm not sure which one has the biggest influence. I'm trying not to take the ibuprophen to see if the supplements work. I've been so upset not knowing if the pain would ever get better.
Nickel103, I think the Lupron/Aromosin combo made my whole body swell, including my hands. But since the Lupron wore off and I got my ovaries out the hand numbness is much less, but was replaced with a different type of finger and arm pain. I couldn't even lift my glass without pain, but it seems to be getting better. I don't know why it would happen after 3 years, I was miserable instantly. But I did have hand numbness before I started taking the lupron also, which I think was from the chemo ending, and the dr. said no. But I don't believe him. It started 3 weeks after chemo ended.
peridot180, I had the one month shot for 3 months. I starting feeling better on day 31 after each shot.
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Nickel, I'm sorry you're having that. Neuropathy is probably one of the worst side effects of so many of our drugs, in my opinion. I do not know whether Lupron causes it, because I've been on Zoladex the last couple years, but hopefully more people will chime in. Are you also on an Aromatase Inhibitor though? I seem to remember that AIs can cause focal neuropathies. I think I had that from AIs, although my MO primarily took my off of those because I had such terrible triggering in my hands. I have now moved on to Zoladex and Faslodex (which is not an AI) and I am doing better on that.
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Nickel103, I'm on Lupron now, but after a few months on Zoladex I started having a weird side effect when going on my daily walks. About 20 minutes in my feet would start to feel numb, like when your feet fall asleep and then start tingling. Turns out that's a known side effect of Zoladex. It went away for me, but it was concerning at the time. I just looked up Lupron and it lists "numbness, weakness, or tingly feeling in your legs or feet" as a rare side effect, so if that's what you're experiencing then I think there's a good chance it's the Lupron. It may be rare, but it happened to me! Peripheral neuropathy is also listed as an adverse reaction that can occur. I would definitely talk to your MO about it.
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Thanks for starting this Mellee. I am wondering if we as breast cancer survivors are allowed to take collagen supplements?
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I think it's better to ask your MO which supplements he/she doesn't recommend based on thier experience.
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I am on Tamoxifen for 4 months now, its been really hard in the beginning, with the hair loss and the mode swings, and body feeling weird. i feel that every time i discover a new symptom of tamoxifen my and try to deal with is, by discussing it with my oncologist, they just say that its a symptoms of the medication and to deal with sorta of. some of the symptoms do go away eventually. the doc said that it takes 6months to a year for the body to adjust to the tamoxifen, has anyone had/have the same issues?
the latest issue is that for the past month or so i have this burning/ hurt feeling in my lower stomach and specifically on my right side (where my ovary). I told my Onco office about it and they think is heart burn or indigestion, it does not feel like heartburn. I have been stressed more than usual recently and was wounding if anyone else have experienced the same symptom of the burning/ pain feelings?
Thank you for creating this form , it help.
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Thanks for sharing your experience JRNJ. I hope you continue to feel better.
Who knows what the future will bring. I keep wondering if I can miraculously make it to 5 years on lupron / letrozole, what will my doctor say next? How about another 5 years? How about you have your ovaries out and keep taking an AI? Why don't you try tamoxifen? I know I shouldn't even try to imagine. At least there should be more research by then.
It's still early but I'm happy to report that I have been feeling quite a bit better that past 2.5 weeks. My headache and nausea are mild and ignorable. My hands aren't cramping the same way. I've been walking more and have begun cycling (and I've never been into formal exercise). I've used a near infrared light occasionally on my back and hands. The warmth can sometimes melt away some of the aches. I've also started up acupuncture again and am taking my supplements.
Similar to Mellee's feet, I've noticed that my hands have started feeling slightly numb and tingly when I go for walks. It's better if I have pockets and they aren't hanging the whole time. I think I've seen that these meds have the potential to cause neuropathy. Doctors often downplay things and don't want to blame their prescription but they should be concerned about neuropathy because you can't risk long-term damage.
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I'm feeling much better from the neck up. No more headaches, minor agitation. Still some insomnia, but sleeping much better (with Lunesta). I think the Lupron was evil for me and possibly the Aromasin too. I'm on Arimidex. My main issue now is pain throughout my body, especially hands, arms and feet. I'm trying celebrex and a bunch of supplements, but not working much. I haven't been on a bike in over a year. Tried once around the block and was totally exhausted. My arms and feet are numb and swollen, especially in the mornings. The muscles in my arms hurt when I clench my fist to pick up a drink of water or drain a sponge. I'm afraid it will cause permanent damage.
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JRNJ, I know what you mean. I stretch while I'm still in bed in the morning, some light stretches of hands, arms, feet and legs and neck and helps me to get out of bed. As the times goes by, I have good days and bad days but I know what you mean with squeezing the sponge
. Who knew draining a sponge would be an heroic act! Not to mention that I feel more like e Picasso painting where my right side feels so different from the left side of the body. Next week I scheduled an appointment with an acupuncturist.
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Lilly, My right side, cancer side, has always been worse in the past, my theory is the cancer was pressing on a nerve. But since surgery, I feel it all over on both sides. I think I have undiagnosed allergies. I went to a wedding yesterday and had one glass of wine and lots of lobster and my body blew up and went into meltdown mode. My MO blew my off as usual. He gave me what I asked for, celebrex, xanax, and told me to try taking Arimidex every 3 days, but didn't seem too concerned and didn't tell me anything more as usual. I was going to ask him about Tamoxifen, than he flew out the door.
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Peridot-
That is why I fired my first Oncologist, he did not seem to care as much about quality of life that I did.
Look, I get it, I have cancer. I am a Nurse and not an idiot. I UNDERSTAND that my decisions have consequences, but I have seen women do *everything* "right" and die of cancer- with the same features my cancer has.
I am of the belief that if my cancer is going to recur then it will happen regardless of my choices. I would rather live HAPPILY until this occurs, and I understand my risks. I will NEVER do hard core chemo again anyway, I will choose other non chemo/ immune therapies.
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JRNJ you got me lost on the wedding and lobster story. How fun to have a wedding at these crazy times! I have stopped wine because doesn't go well with letrozole in my case and hot flashes I get can add on Global Warming
. I had dinner with some friends over the weekend, all had wine and I had grape juice, just like a toddler. LOL! I can tell you after 10 months on anti-hormonal pills, it is getting slightly better. 0 -
VioletKali -
Yes, my oncologist does not care about quality of life issues either, especially if they are complicated like my issues. I am going to find a new one. Still researching.
And you are right, many women do everything right and take these medications and suffer horrible side effects, yet they still get the cancer back. It really is a crap-shoot. It's horrible and scary. But everyone has to make the choice that is right for them. For me, it's quality of life, much like you, that is most important.
Chemo was tough for me, but at least it ended. This is just ongoing and you have to be on these meds for years. I just cannot do it with this problem I'm having. When life is not worth living due to being in pain all the time, you have to re-access your situation and choose between quality of life and length of life. It really is a tough decision. Thank you for sharing yours.
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Ladies, I am back. I met the acupuncturist at the cancer center today. I told him how half of my body feels numb, pain from head to toe and I feel like Picasso's painting
. He asked me questions, checked my pulse that was very fast, and told me in my case, for 2-3 weeks to eat only bland food and not use any spices like turmeric, ginger, garlic, etc. because in my case they were stimulating the nerves and that's why I was feeling pain. I forgot to ask him why the other side of the body feels normal since it is fed the same way. He also suggested meditation classes and told me to build muscle since my tendons are impacted by absence of estrogen and the muscles around will need to help with the movements. I will see him once a week for several weeks and he is going to work on balancing the hormones, whatever hormones are left in my body. I assume for all of you who feel numbness, neuropathy signs should give bland food a try. I was falling in love with turmeric and here you go, I have to break up. Like wine wasn't enough to get divorced from. 
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hi,
I was wondering if anyone has been suggested to take both Tamoxifen and Ribocyclib alongwith Zolodex?
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Soni, I'm on Zoladex (ovarian suppression), Faslodex (an SERD), and palbociclib (a CDK4/6 inhibitor). Another common combination is ovarian suppression, an aromatase inhibitor, and a CDK4/6 inhibitor. I don't typically hear of ovarian suppression and CDK4/6 inhibitors being combined with Tamoxifen, but I don't really know. Hopefully someone else will chime in too.
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Peridot- You are very welcome. I have always said this about the anti hormonal.. "I don't *want* to die, but I refuse to live like this". I truly believe it is a crap shoot. They are offering us the only thing they can...
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Lilly, Your user name keeps changing? lol. My neighbor had a backyard wedding across the street, so we went. I haven't been out of jeans in over a year and nothing fit me I gained so much weight. Looking like I can't drink anymore, I reacted really bad to it. Had no problem drinking on radiation. Thanks for the info. Why do my Drs. refuse to admit their treatments are causing side effects? The Dr. that took out my ovaries said lack of estrogen does not cause body pains, but a week after my surgery while off Arimidex, I got severe pains in my arm muscles (tendons I suppose according to your Dr.) and it hasn't gone away. My overall body pain is getting worse again not better, my arms and feet are numb. My MO said to try every 3 days, but that doesn't sound right to me. Then I get hormone fluctuations, agitation, hot flashes. I'm in a lot of pain. Don't think I can keep going like this. I am also taking Tumeric. I don't know who to believe anymore. But what he says makes sense. I noticed I feel worse with too much caffeine, so been trying to cut back.
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Nurse here.. Of course estrogen loss causes joint pain, this is common knowledge in women's health.Estrogen loss causes collagen loss, loss of lubrication around joints, etc..
Not only that, BUT chemo is actual poison. I took Carboplatin, I essentially was heavy metal poisoned with platinum. Heavy metal poisoning also causes joint pain due to its build up within the bones and joints.
I HATE that Drs blow us off as if this isn't well known.
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