Tamoxifen for gals who have not had chemo
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Accidental,
My oncologist told me that the ultrasounds were not necessary unless I had a problem. Which is fine with me, I don't want extra tests if I can help it.
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It looks like I am getting lymphodema as my arm is getting all heavy and numb. No visible swelling yet but all other symptoms are there and I have sought advice on another post which points in that direction. It had to happen over holidays when it is impossible to get any help. I even went to see my GP at the beginning of December with pains in that general area but said I should talk to the oncologist who I am seeing on the 13th so I just pushed it out of my mind. It has gotten worse by now. What would I do without this site.
Nena
PS Presumably my remaining lymph nodes were doing the job fine for months so I am puzzled why would it happen out of the blue?
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AccidentialTourist,
I am in the same boat as you. I saw my BS last week. I have complained to the rad onc, my onc and the BS about pain in my shoulder area. No one seemed to have answers since there was no swelling. My BS told me to stop using my arm for 6 months. She thinks I am doing too much. I work out daily, play sports with my boys, love to shovel snow, etc. I am also constantly cleaning after my boys. She said it is too much and to Stop. Even ironing clothes bothers my shoulder. I will try to rest it, along with ibuprofen and hope for the best. It does seem to feel better when I don't do much. The problem is, I have so much to do!
Hope you feel better soon.
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Markaz, apart from the pain do you feel any numbness, tingling and/or heaviness ? For couple of weeks now my arm feels as if someone has poured a pint of liquid into it. Tight and heavy. This is not visible though and I hope oncologist takes me seriously as I have been scaring myself reading of lymphodema. I am not nearly as active as you are although I do the usual stuff one has to do running a household. Not using your arm for six months does not sound like a viable option. The last couple of days I have been taking it easy and my husband has been giving me a kind of massage they recommend for lymphodema which seems to help, albeit temporarily. Hope this is just a temporary set back for both of us.
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AccidentialTourist,
I do not feel numbness or tingling, but often feel heaviness. My pain seems to worsen if I do a lot with my arms. I have an eliptical machine and if I use it without my arms, I am fine. Once I use the arms part of the eliptical the pain increases. I also walk about 4-5 miles daily. If I swing my arms while walking, the pain increases. I think this is why my BS wants me to take it easy for 6 months. She also knows me and my high activity level. It's really difficult to change your active life, but I am trying. Of course, my kids don't understand that. I was always the pitcher when we play baseball and now suddenly Mom can't pitch. They don't get it, but that's okay.
I hope your pain gets better. Keep getting those massages, if they help. Heck, get them anyway!
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I am so happy to have found you...let me explain. I have been taking Tamox since July 2008; 5 months, all started well, very mild FX.....BUT that has changed, for the last few months I have had persistant, recurring yeast infections, very heavy, heavy periods (short-3 to 4 days, but very heavy, nervous to leave home the first 2 days), and I have become very impatient and with all that a very low sex drive.
I am 39, had a lumpectomy in March, Rads for 6 weeks this summer, exempted from chemo because of a Factor X study that I participated in that came to the conclusion that I am at very low risk for recurrence.
I do not feel right taking Tamox., I do not feel like me anymore, I am worried about what Tamox. is doing to me and my body??? I will have my first uterus ultrasound in Feb. 2009.
I am very active (gym and jog) and normally a happy-go-lucky kind of girl........I am seriously questioning the pro and cons...
Your discussion thread is helpful, all input and references welcomed to help me make my decision.
Many thanks!
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Makraz,
I have posted about this on another thread and someone suggested this website for the correct massage. I have just read this and have not had the chance to try it but even basic massage we were using has made tremendous difference.
http://www.nwlymphedemacenter.org/vid_mngmntA.php
I think that they should teach us this massage routinely.
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Accidential Tourist,
Thanks so much for the link and the info. I have started to read it but need to go sledding now with the kids. I will read more later.
Thanks again and I hope you are feeling well.
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Oooooh sledding! Fun! We used to live 3 1/2 blocks from a park with a small hill in Nebraska, and we had so much fun sledding there! Now we're in Texas, where today we're enjoying some freezing rain that's probably as close to snow as we'll be getting soon. Luckily, the ground is too warm for the roads to be icy, and the trees look gorgeous with their light layer of ice. But it's not snow...
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Accidental Tourist--thanks so much for that link! I met with a therapist to go over how to do it but this is in more depth and a really good refresher since I'm sure I forgot some details...for example I didn't know how important the first step is as that is where the lymphatic system meets the blood system. So much we are learning through this process, huh?
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It's been some time since this thread was visited. I think it needs a bump.
Incidentally, once I started massaging my arm the symptoms of heaviness and pain improved so much that I have become lazy and am not doing it any more. Hope that is not foolish. How is everyone?
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Hi Accidental,
It doesn't sound foolish to stop massaging your arm because the symptoms improved. You can always start massaging it if needed.
I've been on Tamox since 7/07, had some side effects: hot flashes,night sweats, leg cramps, sensitive skin all which have lessened.
However, about two weeks ago, my left calf had been cramping for over 24 hours. I thought I had a DVT, because my left calf was swollen and the pain kept getting worse.(I also had vomiting and diarrhea). I went to the emergency dept, had blood work and the MD told me the cramps were probably caused by low potassium. After two doses of potassium, I felt much better. Labs done two days later showed normal potassium and my PCP told me it was unlikely Tamox had been the cause but the vomiting and diarrhea had been.
I plan to stay on Tamox for five years.
Karol
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Makraz, you know what I always say -- maybe you could go to a physical therapist. You might have a little tendonitis in your shoulder that could be sorted out. You can't just "stop using it" for 6 months. That's ludicrous. I love when doctors hand out stupid advice like that. See if your PCP will write you a prescription for PT. Or come down to RI for a visit & I'll work on your shoulder!!
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Makraz....I was on an AI until 10 weeks ago. The pain was making my daily activities unbearable. My onco said that the Ai's and tomax. cause muscle and tendon pain. The 'tennis elbow' which is a tendon inflammation is still bad and i think it was ruined by the drug. Ibuprofen is the only thing that makes it go away. But I don't really want to take that everyday either. Try icing and maybe what we need it some therapy as KAK mentioned.Good luck.
Artsee
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karol!!
hey their girlfriend.....
keep eating your bananas...another good source of potassium is actually a Perrier or other Mineral Water for a quick fix....
hugs and chat with you soon...
Kosh
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jessy....
oh my!
if i can copy word for word what you feel...it is exactly what I have been going thru...Exactly!
I started tamox in May...all was good for a few months....
THEN...late periods (never had that EVER in my life)...period starts, then stops,,,,then starts and then is heavy..finally over.......yeast infections and dryness too...can't stand it......
I went to a gynecologist,,,low and behold that month..my cycle was normal.
Somedays I hate being in my own skin!!!!
I am hanging in there for another few months (promised my oncologist)...and then I may think this Tamox thing...
Hugs and Be Strong.....and let me know how you are doing...
Kosh
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The first three months were, hot flashes, and aches and pains. Now that the dosage of tamox is up to 20mg (my onc started me on 10 at first) the heat is still there, the aches are there, but the moodiness is out of control. I haven't decided whether it is a delayed reaction to what has happened or I am really going crazy. i am angry, tired, frustrated and generally ticked off with the world. My dh has diabetes, a heart condition, and needs a new kidney. I am almost jealous of him because he gets all the attention and it is like - my scars are healing so I am suposed to be OK now. My kids told me I have taken irritability to a pro level. I am even mad at the dogs! Is any one else crazy on this drug. I don't want to stop taking it, but I hate what I have become. I used to be nice. i will have no friends left by the time my 5 years is up.
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wilsope, get some Effexor. 37.5 mg to start, up to 75mg or more for depression (up to 150mg) -- works fabulously with Tamoxifen for me.
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Hi Wilsope...I've been on Tamox for 2 months now, and I feel like I'm going crazy. I do normally suffer from depression and anxiety disorder, but wow, never have I felt like this. I've already lost a friend because of the venom that's spewed out of my mouth, and in retrospect, I think 'what was I thinking'.....I know how you feel about the 'healing' process and how everyone expects you to be OK...I'm going through the same thing with my family. It's almost like it's 'out of sight, out of mind', and in the meantime we're dealing with the aftermath emotionally of this disease. I too, used to be nice, and now I'm turning into a 'she devil'
God Bless....diane0 -
Oh, and I want to shout a big thankyou to all of you for being here. I don't feel so all alone in this battle, knowing you're all a 'click' away. Thanks
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Diane
It may not be the tamoxifen! We go on this medication as we are finishing up treatment, and there are other things going on at the same time.
Many (personally, I suspect that it's most of us) slide into mood swings and/or depression. If you talk to your oncologist, I suspect that he has a social worker or other therapists on speed dial. I saw a therapist for about 6 months. I actually tried quitting tamox for 2 months and went back on, and found that there was no change - I was still nuts.
Sounds to me like you are pretty darned normal!
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Thank Sue....I'm going to see my med onc on Thursday and will definitely mention these mood swings. I suspect I'll get through this, and hopefully feel 'normal' again one day, because right now I feel like a raving lunatic. Thankfully, I can still laugh...the Tamox hasn't taken that away. So, I will remain 'nuts' for the next five years, and embrace it!!!!
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Took my first Tamoxifen 20mg. today....hopefully I'll not have side effects but I will post if I do.
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Hi - Thank you all for posting your experiences and sharing your stories. It's comforting to know that I'm not the only one concerned about the se's of tamoxifen. I'm 47 years old and I was diagnosed with breast cancer in Oct 2008. Exactly 1 year to the day that my twin sister was diagnosed. Weird huh? My cancer was caught very early so I did a lumpectomy and just started radiation today. My ONC test came back very good. My score was a 10 so no chemo was recommended.
My sister finished chemo in April 08 and decided not to do tamoxifen. She wanted to try to reduce the amount of hormones in her body through diet and exercise but that hasn't worked as well as she'd hoped despite her losing weight and feeling great. So she's decided to have her ovaries out in June 09. I'm not sure what I'm going to do when I finish radiation. Tamoxifen is supposed to be the drug of choice to prevent cancer from returning. My concern is that I'll be thrown head first in to "faux menopause" with all of the symptoms that come with it (weight gain, insomnia, irritability, moodiness, night sweats, hot flashes, headaches, no sex drive, etc. While I'm already experience some of these symptoms because I'm peri-menopausal, my fear is that my symptoms will get worse and I'll have to repeat it all again in 5 years when my body is supposed to go through menopause naturally.
My onc says that alot of women do great on tamoxifen and have mild se's that eventually fade. But all I've heard are horror stories so I'm abit fearful of taking that next step when I'm done with rad's in late March.
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Cancer Twin, I have all those fears too but my fear of not being there for my son is even greater so I am taking the dreaded thing. What scares me are the stories of women who take Tamoxifen and still get recurrence of hormone positive bc.
On another topic completely I read that Tamoxifen can cause leg cramps and that one of the things we can take to help with this is Magnesium. Last night I took Magnesium supplement as a preventative measure and had my first leg cramp. As you say in the USA 'go figure'.
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Hi, I had bilat mast in May, No chemo, no rads, started Tamoxifen in June, No periods and Really bad NIGHT SWEATS. I guess I can handle the night sweats for 4 more years, some girls have it worse than me, Best of Luck and Gentle hugs. Jeanie
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Has anyone had any leg aches or tingling while on tamoxifen? I have been having weird things going on with just my right leg/foot for the past couple of weeks. I sometimes have joint pain in my knee, sometimes in my ankle, sometimes the top of my foot. My foot is also off and on tingly and sometimes my leg is tingly as well. I suspected that this may be related to tamoxifen so I didn't take it one night. The next day my leg felt about 90% better. I stayed off it for one more day and by the end of the second day my leg and foot felt almost completely back to normal. I took it that night to see what would happen and my leg and foot went right back to feeling yucky. I didn't take it last night and my leg and foot feel much better today. Still not 100% and a little tingly, but much better. I see my onc next Wedneday and will bring it up, but of course I am worried that it is something bad. I'm not sure I could handle bad news right now as I just finished treatment in December. It seems to be somehow related to the tamox. Anyone else with a similar experience?
Christina
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shelteringtree, I have leg aches, and lots of tingling but in my arms and hands, but I have had the tingling in my feet before. I read that it can be a SE of menopause, along with the usual stuff like hot flashes etc, you can also get tingly and itchy which is caused by low estrogen levels, I haven't started tamox yet so I think mine is just peri-menopausal stuff, oh fun!!
Lorraine
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Well, I'm only 32 so the menopause theory is unlikely. I only have the the issues with the tingling just on the right side. I did have it in my left hand once and then it went away.
Christina
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Twin---I just finished up my 5 years of tamox about 4 months ago. I tolerated it pretty well with relatively mild hot flashes and insomnia, some achiness--but the way I look at it, I probably would've had similar issues with natural menopause anyway, which I was nearing (I was 46 when I started taking it), and I wanted to be proactive in trying to prevent an invasive bc in my future. (I am high risk from LCIS and family history). I haven't had any further bc problems, so for me it has worked well. My mom took it years ago (had ILC, lumpectomy and rads) and is now a survivor of over 22 years without a recurrence, so that had a lot to do with my decision making too. I did end up with immediate surgical menopause, (lost ovaries--not by choice--ruptured cysts)--- my oncologist feels any SEs I have are more due to the depletion of estrogen from the loss of the ovaries, not the tamox.
Anne
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