Soreness
Hi. Could you tell me what is the bes... - SHARE Metastatic ...
Hi. Could you tell me what is the best way to deal with pain and soreness from the breadt tumours please.
14 Replies
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I’m sorry I can’t help you as I’ve never experienced pain . Please ask your nurse or oncologist , No one should be in pain.
I was given Fentanyl by my oncologist.
Hi Peskyone,I'm sending much sympathy as you seem to be having a very rough time! I don't have breast tumours, but I do have a very sore right arm from lymphedema. I think you mentioned in one of your posts that you also have a tumour under your arm and one on your clavicle. I'm thinking that these may have produced lymphedema (from blocked/destroyed lymph nodes), or swelling, on that side, and that may be the source of your pain.
For my arm lymphedema, light massage and elevation of the limb helps, as do the expandable elastic sleeves. If you have swelling on your side, and in your breast, it is hard to figure out what motion might best reduce it. I hope your oncologist has prescribed more powerful pain medication than you can buy over-the- counter. If not, I find pharmacists in local drug stores here in Canada to be quite helpful. There are also special stores for cancer-related products. Maybe, there is an elastic vest useful in your case.
None of the foregoing may be helpful, but do know that you have the kind thoughts of many other MBC patients.
Hugs,
Cindy
• in reply toHazelgreen
Thanks you so much for answering. I have had a scan and see the oncologist next week. As the letrozole has stopped working the tumours are growing and it worries me that for the last 4 weeks I have had no medecation or treatment. Last time I saw the oncologist he said if the 2 big tumors in breast start to come through the skin to let him know. Really frightened as to the scan results but will try to be brave. Thank you for caring.
Red71• in reply to
I still think you need a new oncologist, but since you are dealing with this one you should ask him for something stronger than over the counter pain medication and he should work with you to decrease your pain. If he doesn’t, RUN and find a new oncologist!
I do care as I hate to think of someone worried and suffering. It seems obvious that you should be on some sort of medication to stop the tumour growth.
I'm 75, and have been taking 40 mg of tamoxifen for several months after progression to the liver while on 20 mg. Tamoxifen, as you probably know, is one of the oldest of the breast cancer drugs. It was developed in the U.K., and has fewer toxicities than the newer drugs. For me, quality of life is more important than longevity so I'm going with 40 mg of tamoxifen as long as I can (it still seems to be the drug of choice in much of the world, and there's a major study in Germany). Anyway, I'm not pushing it, but wanted you to know that there are other inexpensive possibilities besides letrozole for postmenopausal patients.
Do keep us all posted on your scan results and oncological visits. I'll be hoping that you receive better help than you seem to be getting. Given that Britain is coming out of lock down, I hope someone can go with you when you see the oncologist. I'm speaking to mine on the telephone this Wednesday, and my husband will be on the telephone extension. I think it's good for some of these uncaring practitioners to realize that others (nonpatients) are listening.
Warmest wishes,
Cindy
Unrelated to the thread here but I was interested to read you are on 40mgs of Tamoxifen. I am on 20mgs. because of progression in a small area of my left lung. I couldn't tolerate the stronger drugs like Xeloda so decided to try this. As I am 80yrs. old I decided I didn't want IV chemo. Any side effects from the increased dose of Tamoxifen for you? It is always interesting what we learn from each others posts.
Cheers, June S.
Hi June,
Nice to hear from a fellow Canadian! I live in Saskatchewan, and have had to be assertive to take 40 mg. of tamoxifen.
When I was first diagnosed in 2019, the newly arrived oncologist I saw expected me to take letrozole and Ibrance with no discussion. Since I was trained as a research scientist, I naturally turned to the research literature. I wanted to start on tamoxifen because I did well on it as an adjuvant drug for five years (2006 - 2011), and it was the drug of choice when first developed in the 1970's, credited with saving at least 35% (up to 50%) of the patients. There were also old research papers discussing the concept of "indolent (i.e. slow-growing) disease" since autopsy studies revealed that some women with breast cancer had never been treated for it, and had died of other causes.
Various more recent medical research papers told me that some people have defective alleles so tamoxifen is not readily converted to endoxifen in their bodies. This is the reasoning behind taking stronger doses. There was a controversy in 2018 whereby some North American physicians argued against this strategy, and all seemed to have been converted to using Ibrance (which has never been seen as more than 50% effective!). Currently, there is a major study in Germany once again trying to settle this issue.
I am a socialist who is concerned about the cost in tax dollars for unnecessary procedures. Since tamoxifen costs the system less than $12 a month here, while Ibrance (+ letrozole +Zometa) costs over $7000, it made sense to me to try tamoxifen initially at least. The second oncologist I saw agreed to let me try it. Two months later, I told him that I was taking a double dose. I was able to do this for the first year, and all my scans showed tumor reductions.
However, after the first year, the oncologist would only renew the tamoxifen prescription for a single dose so I thought I should see if it would work. (The oncologist dismissed the idea of his reading any of the research I suggested.) My next two scans showed progression, and some concern about my liver. I decided then to revert to a double dose, but haven't told my oncologist (our telephone discussion on Wednesday should be interesting). I've only been taking 40 mg again for the last two months but my recent blood work looked more normal than it was so I'm hopeful than a CT scan will show improvement.
To finally answer your question, the major side effects I've experienced from tamoxifen have been fatigue and joint pain. However, I really am not sure whether these "side effects" are caused by the cancer itself (in my bones, lungs, and lymph nodes), or normal aging (I'm 75, and both my sisters have artificial knees). Anyway, I usually sleep ten hours or so at night, after eating a hearty supper, so I think I'm doing fine. Certainly, taking 40 mg of tamoxifen, as opposed to 20 mg, has not made any obvious difference in how my body reacts.
My main concern is controlling the cancer tumours before they take over the rest of my body. Towards that end, I'll do whatever I think I have to do, provided my quality of life remains as good as it is.
Thanks for listening,
Hugs, Cindy
Hi fellow Canadian! nice to meet up with you. I am still digesting your notes. Very interesting for me. Firstly though, since your oncologist is in a dismissive mood, why not dismiss him! Why did he arbitrarily decide to drop you back to 20mgs.?
I am sure you have read my posts here and I am like a 'broken record' when it comes to seeking a second opinion. I am fortunate to have an excellent oncologist to go to for second opionions. She is so very well versed and up to date, very clever and organized. She walks into an appointment fully aware of what your questions and problems are and has the well resourced answers. She is a gem. Very calm and attentive. I will try and get a video appointment and pose your idea on the Tamoxifen.
I just had a bone scan today and will have a cat scan on Thursday. Then I will see if Tamoxifen is working for me. Ibrance and Faslodex didn't work for me. And I had a terrible reaction to Xeloda. So I think the heavy duty drugs and chemo are out for me.
I am 80 yrs. old so quality is important to me also.
We have similar mets. Mine are hip bone tumour and Lung nodules in a small section of left lung. I am anxious to see the scan results. The first since starting Tamoxifen.
We have just moved from Barrie Ontario to Burlington Ontario and so new doctors, new hospital etc. My new oncologist looks like he is just out of
diapers!! (a bit overdone). but he is does look like a high school freshman.
Well, you should be able to decide your course of action as long as it is reasonable which it sounds like it is. Stick to your guns girl!
Cheers, June S.
Thanks, June, for your lengthy reply. The reason why I have not dismissed my current oncologist is mainly that he is the second one assigned to me after I asked for a second opinion. I suspect that none of the other oncologists would be any more interested in reading research than he is. He has twice mentioned to me that he is on my side, so I will remind him of this if he has no current reason for refusing to prescribe more tamoxifen.
By the way, June, an Ontario friend (also in Burlington) mentioned to me that she could not tolerate tamoxifen after having early breast cancer. It turns out that the tamoxifen she was given (Apo-Tamox) is a generic version of the drug, which has been reported to have more severe side effects than the brand I take, Teva-tamoxifen. According to an article in Science Direct, "Severe tamoxifen side effects are commonly experienced by breast cancer patients and can be significantly altered by change in tamoxifen brand."
There are two articles about tamoxifen dosages that your former oncologist may find of relevance before discussing 40 mg dosing with you:
(a) Lammers et al, Br J Cancer. 2010 Sep 7; 103(6): 765–771. "The impact of CYP2D6-predicted phenotype on tamoxifen treatment outcome in patients with metastatic breast cancer"
(b) Kloppe-Schultz et al. Frontiers in Pharmacology. 2020, 11:283 "Integrated data analysis of six clinical studies point toward model-informed precision dosing of tamoxifen".
If your oncologist keeps up on the research literature, she will know that there are many other papers on this particular topic, but the two I've cited above are one of the earliest, and one of the latest.
Do let me know (we could use private messaging on this site) what your oncologist thinks about a double dose.
Hugs,
Cindy
Thanks for your reply. I did realize my reply was getting a bit lengthy but figured it didn't matter if it helps us understand each other correctly. I didn't mention that my second opinion oncologist is an hour's drive away otherwise I would love to see her exclusively.
I will pm you.
Cheers, June S.
Sorry to hear about your pain. I would seek a second opinion immediately. I don't understand why your oncologist is not dealing with this. There are lots of pain medications on the market. Call and talk to the nurse or call your family doctor.Also, in my opinion, it is a mistake to wait until those tumours start to break through the skin. I had this happen to me and I was so thankful that I had a very good surgeon who was able to remove the whole breast and the tumour. Once it breaks through it can be to heal. I was fortunate. I have a hip tumour and nodules in my left lung.
Not sure why your oncologist wouldn't recommend consulting a surgeon and why you have no medication. Wishing you all the best.
Cheers, June S.
When I was first diagnosed I used prescription Lidocaine patches I had left over from a bout with shingles. They are large but can be cut into any shape you need. You can leave them on for up to 12 hours. I don’t have pain now but they really helped when I did.
Although they say "no one should be in pain", I am constantly in some sort of pain. and have lately been feeling a bit of breast pain. This scares me a lot as my cancer was straight to the bones De novo. but I sometimes feel like something is going on in my breasts. would you call it a sharp type of pain, or dull, or hot?
definitely talk to a pain specialist about this because it’s true you shouldn’t be in pain but you might have to be in a little bit of pain sometimes. there there must be something that can help you at least 80% of the time. I take Panadol prophylactically constantly. that’s for my bone pain. for my headaches and other sorts of pains I take ibuprofens. and I’m also on Tagen which is a slow release oxycodone prophylactically constantly. I don’t know if that helps you but someone should’ve looked at this for you already.
