MBC, joint pain on meds: I've been on... - SHARE Metastatic ...

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MBC, joint pain on meds

shannamilton
shannamilton

I've been on letrozole and ibrance for about a week and a half. I felt find on ibrance until the last few days. My knees and hips are really achy. I'm thinking it's from the meds. Anyone else experience this? I'm 34, so I am in good physical condition. I have mets to 9 & 10 vertebrae only. Had rads to vertebrae, scan will be in November.

29 Replies
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Hi,

I facilitate a support group for women taking aromatase inhibitors and, unfortuneately, joint pain is quite common when taking these medications. A few women have said that accupuncture is helpful. Also some women have found relief through taking the supplements Solgar or Coenzyme Q10 (CoQ10) . Be sure and tell your doctor about your symptoms and inform him or her if you decide to try any of these coping mechanisms. Good luck and I hope you feel better!

Hidden
Hidden

Hi Shanna

It’s probably the letrozole. I’m a lot older than you and was fairly stiff and achey on letrozole. I was switched recently to faslodex, a similar drug give once a month after 3 loading doses. I have a lot less discomfort on this. I don’t think it’s the Ibrance although Ibrance can make you tired.

shannamilton
shannamilton in reply to Hidden

Thank you for the information. I have my second shot Friday. I'm not looking forward to it. But the alternative is much worse. I just need to remember to be thankful for every day. Even if I am achy and fatigued.

Hidden
Hidden in reply to shannamilton

I’m a little confused. 😐Letrozole is a pill. Faslodex is a shot. What do u get by injection? Makes sense that it would be faslodex cause they usually us that in premenopausal women tho in my case not.

shannamilton
shannamilton in reply to Hidden

The shot I get is faxlodex. I had a hysterectomy last year, so I can take meds for post menopause women.

Clair19
Clair19 in reply to Hidden

Are you having problems on Faslodex? Mention that because it normally does not make you sore. I mean my boobs do hurt at times, but that’s nothing. I know you work full time but can you take like a little something for discomfort?

My Mom was 30 when first diagnosed. I was 12, that was a long time ago. She lived over 25 years, however there where no good meds just hard Chemo. I wish you all the best and keep us informed how you are feeling and doing.

Thanks for the insight Clair. I have 3 kids, ages 10,7 and 4. Hearing about your moms survival gives me hope. I would love to have 25 years with my babies. I'm sorry about your moms passing, that's very difficult.

Clair19
Clair19 in reply to shannamilton

Thanks so much for that. I didn’t mention my brother was 7 and had cerebral palsy. When she passed in 1990 my Dad died about a year later. I took my brother he was a joy! When he died at 39 I lost it, we where very close. I think with today’s new drugs you will live so much longer. You will have many years with your children.

Hi, Shannamilton! I also am a little confused re whether you're receiving Letrozole or Faslodex, since Faslodex is given by injection and Letrozole is taken by pill. If you are indeed receiving Letrozole, it can definitely give you stiffness and arthritis-like symptoms of soreness and inflammation. I have read that the women for whom the drug is working the best develop these symptoms and that they occur in approx. 50% of women taking Letrozole.

Exercise is key in combating them. I, too, have experienced these symptoms on my Ibrance/Letrozole regimen and when I can be physically active, it makes a huge difference. Even just walking can help to work out some of the stiffness and soreness. If this regimen is working for you, it's worth sticking with it as long as you can.

It's encouraging to hear that your mets are only in two vertebrae and that they have been able to be treated w/rads, as well. I wish you all the best w/your treatment moving forward. Keep us informed on how you're doing.

Godbeforme
Godbeforme in reply to Dianne417

Letrozole worked on me starting on day 1; I would say it was a psychological effect had I been expecting anything, but on day 1 I felt it in my stiff ankles and wrists, which I had not expected AT ALL! After that, I went about 3 weeks not feeling hardly any pain but then the 4th week I felt like I was crippled. I am now taking fish oil, glucosomine condroitin, magnesium, potassium, 1000 mg. calcium, D3, and claritin (Loratadine generic name), and it is manageble; oh and 2 tylenol 500 mg. as needed for pain. I take the calcium 500 mg at a time as recommended for absorption and with food for stomach acid to work it's magic. God bless you and heal you in Jesus name, amen!

I'm sorry you have to go through this so young.My prayers and good thoughts are with you! I just know when I was on letrozole I ached and had stiffness all over. My onc had said to take advil or something like it. Walking helps too. I hope you find relief! Hugs

Shanna yes, Ibrance/Letrozole does cause bone pain for me as well. My legs and back hurt mostly. It is one of the side effects unfortunately.

I make sure to move around regularly as that seems to help.

Good luck with these meds. They have shrunk the nodules in my lungs significantly!

Spiffy, thank you for the relevant insight. I had radiation before starting this. I hope that I have as much luck as you on these meds. I've talked to a few women that have been on it for years, and some that have only been on it for a few months because it stopped working. It is so stressful to deal with the unknown. I dont think I could cope without my anti anxiety medication.

Hi Shanna,

I take Letrozole as well, and I have felt achy since I started it, but it's manageable. I am also in my 30s. We must be a rare breed, as I have not met anyone else in our age bracket with metastatic breast cancer (or perhaps they are on this site and I just don't know it!) Two weeks after my periods stopped after having my first Zoladex injection I was started on Letrozole. I run my own pet sitting and dog walking business, and find that I feel a lot better when I have been out for hours with clients' pets. So staying active and exercising is a must! Have you thought about having complementary therapy? That might also help you manage your symptoms.

Take care,

Sophie

Good morning Sofie, I believe we are a rare breed. Rare breeds usually are usually equivalent to amazing, special, and expensive... lol all of which is true. I plan on starting to swim soon. I just have to get a little energy and motivation. I'm working on my eating now. Chemo and surgery really put me in an unhealthy place over the last few years. I went from 137 lbs to eventually 171 a few months ago. I am down to 158 lbs, which was 154 before I was diagnosed again. I hit the frosting hard and ate my emotions this last month. But, nevertheless it's time to get back in the saddle and start kicking butt again.

SophSP
SophSP in reply to shannamilton

Hi Shanna!

I like your description of rare breeds! I think I can handle that. Swimming sounds like a good idea, just don't do it like I did back in July. I asked my GP what exercises she would recommend that would be gentle on my bones and she suggested swimming or cycling. Well, I went swimming for an hour. I felt great while I was swimming, but I was exhausted afterwards and fell asleep when I got home. So then I was told to just take it day by day and to try 30 minutes instead of an hour (I haven't gone swimming since, but I plan to at some point). I suppose I felt that I could manage the same as I used to before my diagnosis.

That's a good idea about working on your eating plan. I saw a dietitian recently, who gave me some good tips. Perhaps you can do the same. Do you have an appetite following chemotherapy? I attended a cancer forum last Saturday and picked up a brilliant cookbook designed for cancer patients, with really good tips on how to increase or reduce calorie intake, what to eat if you can't swallow, what to add/take away, how to manage with cooking when you don't have much energy, that sort of thing. Let me know if you are interested and I can see if I can find an online link for it. Or I can share some of the recipes with you.

You sound really strong and motivated. I wish you all the best!

Sophie

Hi Shanna!

I’m probably the only one on here not on Ibrance...good luck with this combo...I use magnesium spray for bone pain and enjoy exercising a lot which appears to control aches and pains as I have very little...

-Have a great day!

-Be Blessed!

SophSP
SophSP in reply to Rhwright12

Hi!

I don't take Ibrance, so you are not alone!

Take care,

Sophie

Clair19
Clair19 in reply to Rhwright12

I take Ibrance, just Faslodex at this point.

Clair19
Clair19 in reply to Clair19

Sorry I meant to say I don’t take Ibrance.

Cide
Cide in reply to Clair19

Ibrance causes bad side effects for me.

I’m on faslodex too.

I wish I could just stop the ibrance!

Does just taking the faslodex work for you?

Thanks, Susie

Arkait
Arkait in reply to Rhwright12

i take only letrozole

Hi, Shanna!

My MBC was diagnosed in November with mets to spine and pelvic bone. I've been on the Ibrance/Letrozole protocol since December. In my own experience, the pain to hips and knees was much more pronounced in the first few months. That has almost totally disappeared nine months later. I think it's part of the body simply adjusting to this new drug in our systems. Also, I was much more fatigued in the early months; you don't mention if you are experiencing this side effect as well.

God bless you on this journey! You are among a great group of women with much of their own experiences and recommendations to offer! XXOO Linda in Seattle

I had some arthritis in my wrist after an injury and was on Celebrex 200 mg every morning for that, long before cancer. Along came cancer and treatment with Letrozole and later Faslodex and I noticed that when I had to go off Celebrex for several days before a procedure, my joint pain was very noticeable until back on Celebrex. So ask if Celebrex might help your joint/bone pain.

Hidden
Hidden

Hi Shanna, I am also not on Ibrance - it is not yet available to us here. Was on letrozole for 3 years and did end up with knee and ankle aches as well as jaw - well after I went off it! Having been on other drugs since then I find the jaw aches are periodic - depending on whether I am tense for any reason - but knees and ankles have remained not great. Saw an osteopath about knees some time ago and he did say that at over 70 and after several injuries to knees and ankles over the years of misspent youth I would probably have some discomfort anyway and it may just be aggravated by oestrogen suppression. So Celebrex or similar helps when necessary.

Good luck and hope that with your youth, it wears off.

I have a question, I'm just starting Letrozol. Does the joint pain occur

soon, or after a few weeks/ montns, usually?

Mine started within a few weeks, it's not constant. Just on and off. Some days are better than others.

I was having joint or bone pain as well and was relaying that to a friend of mine who is a breast cancer survivor. She told me to take 24 hour Claritin which I thought was quite strange, but sure enough it worked immediately and now I take it every day and am totally pain free!! Her oncologist from MDAnderson recommended it to her when she was dealing with the same pain.

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