Bottle o Tamoxifen
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Dblmocha , I have been on Tamoxifen since April 15th of this year, and also was having insomnia, mild hot flashes, aches and pains--mostly in my lower legs/calves/shins and feet. I've been taking Magnesium Citrate powder at night before bed, mixed with hot water (tastes like a hot raspberry lemonade) till dissolved. The brand I take is The Vitamin Shoppe's version of "Natural Calm" (theirs is called "Calm Zone Magnesium" which is Magnesium Carbonate & Citric Acid).
I started with 1 teaspoon of the powder mixed with about 1/2 cup of water, and it worked really well helping me sleep, wiping out the hot flashes, keeping the leg/foot pains at bay, and then even helps with keeping me regular--a great benefit
This week, though, I've increased the dosage to 2 teaspoons in 1/2 cup water, because I started getting the leg/foot pains back. This has done the trick, and I feel well again and have been able to sleep through the night, unwoken by pain.This is, at least, what works for me. I don't take any sleeping aids or pain killers or anything else (although I take Curcumin Turmeric capsules for anti-inflammatory purposes, and my Oncologist says that they may also be helping to keep the hot flashes in check). I hope this information can be helpful, Dblmocha
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Feeling, I am happy to hear your appointment went well. It is always nice when a doctor takes time to listen to you. I just do not understand why some of them are so bent on not blaming anything on Tamoxifen. It does have side effects, which most won't acknowledge. I saw my elderly ( he is 75) not so well MO on Friday, it was his last day as he was just filling in until the new MO's arrived. He did tell me that Tamoxifen is so complex that they do not totally know what it all does as each person is different. Since we are moving I asked him for a referral, he brought up my hot flashes which are still there but better than right after surgery and he didn't again mention putting me on an AI. I will see my new MO in the new hospital in 3 months and will ask her. I should then be able to move my appointments to every 6 months as I will be two years out.
Poor doctor seemed so displaced and haggard but still did joke about borrowing me his pocket knife for the cyst that formed after my last mammogram from either a blood clot or from dead fat cells from my fat grafting procedure I had last November. I "GET" his humor so that did not bother me. He was examining my breasts at the time and I still turn red so I am sure he was trying to get my mind off the exam. Now my sister who was dx 2 months after me hated him!
I take Effexor for hot flashes and I do get some aches and pains at night-not sure why this all happens at night! I will be investigating some vitamins, now that I had surgery last March to remove my ovaries I am wondering if my calcium is not low. I didn't have any blood tests at last Fridays appointment as they stuck me 3 times- twice in one vein and still not blood so I got nauseas and grumpy and told them ENOUGH and said if the DR totally had to have the blood then I would try again after eating and drinking, cause they were not sticking me and digging again!! UFFFF!! I HATE HATE HATE needles!! Dr was nice and said I was fine!! LOL
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I can't believe the number of studies I've read that say that Tamoxifen does not affect mood, that nausea will go away, and that joint pain is minimal and manageable. I've been on Tamoxifen for 4 months. I cry all the time and my personality has disappeared. I feel nauseated all day, every day and often vomit. The constant joint pain is neither minimal nor manageable. I have trouble concentrating and keeping up with conversations. Iwas coping very well with my cancer diagnosis and treatment until Tamoxifen. I don't care if placebos had some of the same side effects. I know how I feel and I know this is no way to live. I need the medical community to stop telling me that very few people have these side effects. I'm happy for those people. Unfortunately, I'm one of the ones who cannot tolerate this drug. I was told today it is my only option as a pre-menopausal woman. I cannot live like this.
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claresmum I am so sorry to hear of the terrible time you are having. I'm guessing that you must be relatively newly diagnosed. You are right that that is no way to live. Don't underestimate the role that shock and stress can play in playing havoc with you, on top of the medications. If you are not in a good enough place to strongly insist on some help with these side effects is there a family member or friend who could go with you to see you doctor?
Wishing you well. XXXX
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claresmum. Sorry to hear you are suffering so much. A couple of things to consider - would you consider taking Effexor? It is an anti- depressant that does not interfere with Tamox. I was about 6 months in to taking Tamox and I could feel myself starting to sink - not wanting to go anywhere, preferring to spend the day in bed vs go to work, etc. I started on Effexor and it has really helped.
I don't have your other side effects, but I'm wondering if you have discussed ovarian suppression, so that you could try another drug that is used with post menopausal women.
What hospital are you at? Maybe consider getting a second opinion at Sunnybrook or Princess Margaret?
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claresmum---I would think your MO would find a solution for you since you seem to have frequent vomiting which means you probably aren't keeping the Tamoxifen down anyway. Maybe you could ask about splitting your dose between AM and PM. Or try taking turmeric and ginger which might help your joint pain and the ginger might help your nausea. I would also ask about Effexor which would help with your mood swings. And I agree, depending on your age, ovarian suppression and an AI might be the ticket. I just wonder if you're getting any benefit from Tamoxifen if you are constantly throwing it up!
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Claresmom, Depression can be a side effect of Tamoxofin. And recently I too have felt it. Just remember Effexor is handed out like candy by our MO but it's not the only antidepressants you can take with Tamoxifen. I tried it but had horrendous headaches and dilated pupils,hot flushes so after 3 days I stopped. My MO said there's only 1 other drug I could take and that is Lexapro. It has worked wonders for me and I'm feeling much better. My counselor was shocked to hear me say I was first put on Effexor. She said it is a very hard drug to stop when you want to get off it.Sorry didn't mean to scare you just remember it's not your only option.
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FYI
Escitalopram (Lexapro)
Drugs and Foods to Avoid
Some medicines can affect how escitalopram works. Tell your doctor if you are using the following:
- Buspirone, carbamazepine, cimetidine, fentanyl, lithium, St John's wort, tramadol, or tryptophan supplements
Here is a link :Choice of Antidepressant May Affect Survival in Women on Tamoxifen for Breast Cancer
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Hi all!
I have been on tamoxifen for just over 3 months, and a few weeks ago, my head started to feel fuzzy with a dull pressure around my forehead. Anyone else experience this? I am not sure if this is related to tamoxifen and trying not to freak myself out if this is not from tamoxifen. I have this question into my oncologist as well, but I haven't heard back yet. Thank you.
Chrissie
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I've been having head issues for the last year and a half after a year on Tamoxifen. I get fuzzy headed/lightheaded, some nausea, pressure in my head (not lying down but when I bend over, especially yoga). I was told sinus issues, put on nasal spray and nasal rinse. Did get some relief but has returned over the last couple of months. Went back to ENT who discovered my lymph nodes were slightly swollen (NOT something you want to hear after BC!) so he put me on an antibiotic for 7 days. On about the 8th day I realized that all my issues (for the most part) were gone!! I was tossed into surgical menopause back in Jan so I do still have hot flashes which sometimes make me a little nauseous, but otherwise I feel great! This may be the best I've felt since my diagnosis. I have to return to ENT to check lymph nodes in a week or so but best I can tell they are normal. And now that my MO has turned me on to iCool for my hot flashes, I'm sleeping like a baby! Only 1 or 2 flashes a night! My ENT was quick to let me know that some docs feel that Tamoxifen can cause allergies to start or exacerbate existing allergies. I've never had them before and am getting tested to know for sure if I do have them. Just found out both my parents developed allergies around 50 so is it the Tamoxifen or just age? Kinda like my hot flashes before surgery.....tamoxifen or age? We may never know!
Oh, and don't worry chrissie. First thing I thought was brain cancer/tumor!! It's amazing the dark places we go when something isn't right. I have a great team of docs and not one has suggested a brain scan. They all say sinus issues for sure. We'll see if they are right but since I feel so good now, I'm betting they are. Look up some of Tamoxifen's side effects. This stuff causes everything!! Good luck. Fingers crossed that it's nothing.
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Lala1-thank you so much for sharing. I think the issue is starting with my eye feeling dry. Also, I was given 2 different types of tamoxifen this time, and I think the new one maybe doesn't agree with me. I took the old type today and yesterday and headaches/fuzzy feeling better-just eye/sinus pain. At least, this is what I am hoping and not something dark because yes that is where my mind does go.Chrissie
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Chrissie I have that dull pressure it is particularly noticeable on a "bad" day (meaning a day when I am worse about holding a thought in my head!
I have had quite a lot of sinus issues but had never thought of blaming good old tamox .... though at this stage if a tree blows down in a gale it's probably because I'm on tamoxifen!!
My MRI brain scan is on Friday (can't wait) oops I mean can't wait to GET IT OVER WITH! Neither MO nor I think I have anything bad but he wants to rule out any other causes before making decision on switching me from tamox to AI's. Obviously I am hoping for nice clean result from MRI but have no idea what to hope for with regard to tamox vs AI's as from what I've heard on here they are no barrel of laughs either. (sigh!) However meeting other folk on here is always a reminder to be grateful for the fact that we are alive, the nasty meds may in fact be lifesaving meds and that there are many who have gone before us who would be very grateful to have our set of conditions. I am saying this to remind myself.
When I came out of surgery the one word that was ringing through my mind was "grateful". Then I ran across a lady in Lewisville, NC who makes necklaces with inspirational words on them so I bought myself a present to celebrate surviving!
This is it. I am sitting here in pjs right now but soon as i've showered I am going to put it on
XXX
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Hi All,
I haven't been on for a long, long time but have been feeling so tired, foggy and achy that I decided to explore Tamoxifen side effects. I have also gained 30 pounds despite counting cals and steps. It is so frustrating! I was surprised to read that some of you are experiencing the SEs several years in? I am starting year 4 and still not menopausal. My periods stopped during chemo. I did have hot flashes after surgery and chemo but those went away so I thought I was in the clear. Catching up on all these posts makes me feel like I am not imagining things and I will now start trying to wrap my head around six more years.......ugh.
Thanks,
Susan
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Feelingfeline-thanks for the reply. I hope your MRI goes well this Friday. I am going to call the Oncologist back tomorrow-missed his call to discuss my SEs. I am afraid he will want to have me scanned. I wanted scans when first diagnosed but was told not needed unless I would have symptoms. Now that I have symptoms, the thought of scans freak me out!Chrissie
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Hi,I have been getting dizzy while laying down at night and with Yoga so I saw my GP who told me maybe I should have a scan to see if there was anything in my head- he had a student with him and said - OHH do not insult the client - what I meant was anything in your head that does not belong there. He scheduled me to see an ENT and will leave it up to him if I should have a brain MRI. It took me about 6 weeks to see an ENT and I will see him on July 7th. I have been freaking out!! I am hoping its just a side effect of Tamoxifen or sinus issues or about anything else!!
I have been super tired on Tamoxifen and seem to not have the energy I had before.
Lala- where did you get icool? is that a tablet you take?
Thanks.
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ndgrrl---I buy my iCool at Walmart. They have the best price. It's in the vitamin section with all the Estroven and other menopause stuff. I take one pill in the morning with my breakfast. So far, it really seems to help. Alot of the Amazon reviews said to give it a month before deciding if it's working. It took about 2 1/2 weeks for me.
Let me know what the ENT says. I have an appt with one next week to see if my lymph nodes are back to normal but I do feel really good after the round of antibiotics. Not one of my docs has suggested an MRI and I have to say, I'd probably freak out too to have a scan. I'm sure every one of us on these boards would!! Good ole scanxiety!!
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(waves hello to "tamoxifen" board) At the beginning of the journey myself--second lumpectomy scheduled for July 7 to get clear margins. I keep trying to convince myself that I haven't been unduly affected by side effects for any of the OTHER meds I'm taking so why should I react to tamoxifen any differently? Yet I'm still worried sick, probably needlessly.
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Ndgrrl, pre BC...I had some dizziness and vertigo episode issues. I was sent to ENT. He did do a brain scan which was clear but the more common reason was under treated seasonal allergies I started to have. Once I was taking allergy meds and nasal sprays, everything cleared up. I hope it s the same for you!0
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queenmomcat best wishes to you for your treatment.
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Hah! Will not be going for brain scan on Friday after all. DD doing ballet summer school at the moment with end-of-week theatre performance scheduled for 16.00 Friday. Scan scheduled for 14.30 that same day. Hospital about 30/40 mins from theatre, scan reported to take 30 mins. No probs. Dropped DD off at ballet yesterday and learned theatre performance now at 15.00. AAAGH....does not compute...does not compute...It also happens we are going on 2 week vacation on Sat. Rang hosp and rescheduled for Monday 20th. The downside is 2 weeks more before decision made on whether I stay on tamox, the upside is now I will have some extra time to do my packing.
Probably the most unexpected conversation the ballet school head teacher had all week, if not all year.
Head teacher: Did you get the text to say that the performance is now starting at 3 o'c?
Me: Oh no! I have a brain scan at 2.30!!
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Feelingfeline: thank you, and to you as well! (love the name and icon, my username refers to my cat(s). My owners.)
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Honestly when do the side effects stop? I have never been on any type of medication where I have experienced the side effects.. I know these side effects are not in my head but now my body aches... I feel like I am 70.. and I'm not even 40! I feel so weak, I used the weed eater yesterday in the back yard and by the time I was done my arms were shaking. I can't sit for any period of time without getting up and having to walk out the pain, the same goes for waking up in the morning. Quality of life has to improve, who can life like this for the next 9.5 years? - there has to be another option!
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CindyK have you tried supplements such as magnesium? I'm taking several including calcium, mag and flax seed oil as well as Gabapentin (nerve med.) They improve my energy level and cut down on the aches. They have allowed me to slowly work up an exercise routine at the gym since Feb. I started with a really bad back (preBMx ) and now I can hike or walk 3-5 miles and lift some weights. The only thing it doesn't help are the HFs (Gabapentin helps those).
Maybe talk to your MO about supplements.
Scottie
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Scottiemom11, I haven't tried supplements however I am willing to give anything a try.. I'm just curious how many supplements or other medications must be taken to counteract the Tamoxifen? Biotin for hair/nails, Ritalin for brain fog, Effixer for depression (not there yet), then magnesium for the aches - who knows what else. That is a lot to swallow for someone who never had a regular medication routine prior to 2015.
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Cindy_K you are right. . .the supplements are alot to swallow. The calcium, mag and Vitamin D are all combined into one tablet, but I have to take three a day. Up to 3 flax seed oil per day, plus the biotin (hair, skin & nails), regular gummy vitamin and I taken gummy probiotics. Then I have to take 2 gabapentin/3x per day. It all helps some.
Ask your MO about Gabapentin. It works on the hot flashes and nerve/muscle pain.
Scottie
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Hey Cindy -- I can commiserate on the pills -- I never took anything before I was diagnosed in 2013 -- then I started on tamox, added vitamin D, and added metformin as well based on a few studies I read. My mood took a nose dive about 6 months after starting tamox and decided to give Effexor a whirl. Along the way my hair started to fall out (which could have been related to multiple surgeries), so I added biotin. Cue an iron deficiency, so added iron supplements to the list as well as vit c for good measure because that's supposed to help the absorption of iron. And now I have my little 7-day pill box that I fill up on Sundays!!
I'm heading out next week for vacation -- my parents are coming as well -- I'm pretty sure I'll have more pills that my dad, but my mom and I may have to count to declare the winner:)
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Check with your dr about flax seed oil. They took me off of it when I was diagnosed with estrogen positive. Apparently the molecules are like estrogen molecules. I had been taking the flax seed oil before diagnosis for dry eye
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Also read up about the benefits of turmeric. The latest studies say it helps with arthritis pain as much as some rx meds. Our Tamoxifen pains are alot like arthritis. I take 1 capsule am and pm and am almost 100%. I work out now every day by running and doing yoga. Turmeric was a life saver for me.
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Thanks ladies.. What is the miligrams that you all take in those supplements?
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minivan - there is an ongoing study looking at the impacts of metformin on bc based on the observation that women being treated for diabetes have a lower incidence of bc. That's a huge simplification, but if you Google metformin or glucophage and breast cancer studies, you should find some info. Last time I checked the results of the study I had read about were not yet published
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