Dear Tamoxifen,
you may be saving my life but you are also taking my quality of life away. Your side effects are causing me such distress, RLS, leg cramps, pain and insomnia - when will it stop. Tears every night, not knowing what I can do to stop this onslaught on my body. Over 3 years to go - can I survive you or will you drive me insane? Please tell me is this worth the struggle!
I take Celebrex (anti imflammatory ) for a arthritic knee, I didnt start this until a couple of months ago. It helps the bone pain a bit, but I am still in pain and need more pain relief most days. I have found walking helps a bit but gardening etc make it worse.
I got to admit I sometimes wonder what my chances would be to stop all the meds and 'let nature takes it's course".I have only been on these since April and obviously have a long way to go.
Just to tease me, they could take out my ovaries and then I wouldnt need the monthly injection but because of the DVT, they dont want to go down this route.
It is weird though, I held it together during the surgeries, chemo and radiation but am really struggling now!
Hang in there, life is for living!
We aint beat yet!
regards
Sandy
I take Celebrex (anti imflammatory ) for a arthritic knee, I didnt start this until a couple of months ago. It helps the bone pain a bit, but I am still in pain and need more pain relief most days. I have found walking helps a bit but gardening etc make it worse.
I got to admit I sometimes wonder what my chances would be to stop all the meds and 'let nature takes it's course".I have only been on these since April and obviously have a long way to go.
Just to tease me, they could take out my ovaries and then I wouldnt need the monthly injection but because of the DVT, they dont want to go down this route.
It is weird though, I held it together during the surgeries, chemo and radiation but am really struggling now!
Hang in there, life is for living!
We aint beat yet!
regards
Sandy
I take Celebrex (anti imflammatory ) for a arthritic knee, I didnt start this until a couple of months ago. It helps the bone pain a bit, but I am still in pain and need more pain relief most days. I have found walking helps a bit but gardening etc make it worse.
I got to admit I sometimes wonder what my chances would be to stop all the meds and 'let nature takes it's course".I have only been on these since April and obviously have a long way to go.
Just to tease me, they could take out my ovaries and then I wouldnt need the monthly injection but because of the DVT, they dont want to go down this route.
It is weird though, I held it together during the surgeries, chemo and radiation but am really struggling now!
Hang in there, life is for living!
We aint beat yet!
regards
Sandy
You are right Sandy, my quality of life is what I am fighting for but also the fear of recurrence is so high I am trying everything I can. I became so desperate a few weekends ago I tried Valpam and would you believe it eased the muscle tension somewhat and am now taking it every morning with my GPs consent.
My problems with swollen feet, knees, hands you name it are now on the agenda and I am trialling Frusemide a diuretic with a little relief. Ofcourse all the medications have other side effects to be watchful with however on 1 January I will have clocked up 2 years with Tamoxifen. I wear surgical tights and travel stockings most days hopefully to prevent any DVT that may be lurking.
My husband has had DVT and I am fully aware of the problems that can cause. I now go for my morning walk before I have breakfast and take my tablets otherwise my muscles are so stiff and sore within half an hour of taking the medication that I cannot even struggle up my drive way.
I am however determined not to let this beat me, there are days that I suffer terribly especially on a weekend when I want to do my gardening or house cleaning and then I need to sit down and have a few tears to feel a bit better and just accept my problems are getting me down a bit.
I have found another way to relax, it is called Ta Ke Ti Na http://www.taketina.com/ and I really enjoy the rhythms and movement even when I am aching all over - it seems to gently massage my soul.
I will keep looking for ways to cope and get through this difficult time in my life. What keeps me going is that others have been there and done it before me so I will keep going too!
All the best Suzf
You are right Sandy, my quality of life is what I am fighting for but also the fear of recurrence is so high I am trying everything I can. I became so desperate a few weekends ago I tried Valpam and would you believe it eased the muscle tension somewhat and am now taking it every morning with my GPs consent.
My problems with swollen feet, knees, hands you name it are now on the agenda and I am trialling Frusemide a diuretic with a little relief. Ofcourse all the medications have other side effects to be watchful with however on 1 January I will have clocked up 2 years with Tamoxifen. I wear surgical tights and travel stockings most days hopefully to prevent any DVT that may be lurking.
My husband has had DVT and I am fully aware of the problems that can cause. I now go for my morning walk before I have breakfast and take my tablets otherwise my muscles are so stiff and sore within half an hour of taking the medication that I cannot even struggle up my drive way.
I am however determined not to let this beat me, there are days that I suffer terribly especially on a weekend when I want to do my gardening or house cleaning and then I need to sit down and have a few tears to feel a bit better and just accept my problems are getting me down a bit.
I have found another way to relax, it is called Ta Ke Ti Na http://www.taketina.com/ and I really enjoy the rhythms and movement even when I am aching all over - it seems to gently massage my soul.
I will keep looking for ways to cope and get through this difficult time in my life. What keeps me going is that others have been there and done it before me so I will keep going too!
All the best Suzf
Doesnt it get you down!!!!!!!!!! I had to come off the tamoxifen because it gave me a extensive DVT, now I have a monthly Zoladex injection and Letrazole pill daily. I didnt have too many side effects with the Tamoxifen but the current two, holy moly!!!! Bone and joint pain 24/7, insomnia, restless legs at night, hot flushes, ......... and endless exhaustion and depression. I havent the courage to stop taking the drugs as I had lymph nodal involvement too. My legs constantly hurt, one swells up daily with the persistant DVT. It is hard to find much pleasure in life sometimes.
Like you, I wonder whether I can keep going but feel that I dont have too many options if I want to live!
Sandy
Hi Suzf, Glad to hear Sifrol is working for you. I am having a few issues with Arimidex at the moment but I feel like you, I want to continue the course. It seems there are options if drugs are affecting you too greatly so always speak up to your Oncologist. I know you'll get there!
Hi Suzf,
I sympathise with you although I am not taking Tamoxifen, my drug of choice is Arimidex which does not cause me too much distress, just stiffness in the joints but it seems to work itself out through the day. I did experience restless legs during my chemo. though, my magnesium was very low and so took a course of Magnesium. Please discuss your distress with your oncologist, they may be able to recommend some solution for you. Kind regards
Hi Suzf,
I sympathise with you although I am not taking Tamoxifen, my drug of choice is Arimidex which does not cause me too much distress, just stiffness in the joints but it seems to work itself out through the day. I did experience restless legs during my chemo. though, my magnesium was very low and so took a course of Magnesium. Please discuss your distress with your oncologist, they may be able to recommend some solution for you. Kind regards
