Hand and Leg Tremors on Ibrance/Letrozole?

[friesianfan]

Anyone experiencing hand and leg tremors on Ibrance/Letrozole Combo? My wife began having pretty significant hand and leg tremors about six months ago. At times, she can't eat soup or drink out of a normal glass or read messages on her cell phone because her hands are shaking so significantly, especially her left (non-dominant hand.) Ditto with her right leg, which sometimes goes up and down a matter of inches for quite a long time (and this also means both right and left side are affected.) Her onc (Dr. Nancy Lin at Dana Farber, whom many of you have seen present online at the EMBRACE programs) had her do full body MRI and brain MRI, along with her regular CT scans in the past week, but nothing turned up (which of course, is both good and bad, as the uncertainty is still stressful.) If she focuses really hard, she can make the leg stop, but the hands are pretty much uncontrollable. Just as a reminder, she has mets to spine and pelvis, and there was no sign of progression in any of the scans, so she has been doing really well on the I/L and Zometa combo for two years now, since de novo Stage IV MBC Dx in early March 2017. Any thoughts welcome!

Thanks everyone,

Dave

PS Thanks to so, so many of you for your dozens of welcoming comments when I joined this site around Christmas. I read my digest every day (actually around 1:30 AM when it comes in!) and I have commented a few times to others when things we have experienced might be helpful or relevant but I still do feel a little awkward as a hubby. That said, I enjoy reading about Sophie's trip to Iceland, Barb's efforts to get back on her horse, and many other highlights and lowlights, as well as all of the direct clinical info. I do share lots of things with my wife when I learn things that are helpful, so I am "out of the closet" with her about how much I appreciate the site, and I have given her the link a number of times--you can lead a horse to water...well you know the rest! We also shared the site with Dr. Lin last Friday and she was very pleased to hear about it and that others were learning about EMBRACE through this site. Thanks again everyone!

[Red71]

I had fine tremors when I started the combo but I think it was general weakness and getting used to opioid pain meds. They have gone away as I got stronger and further into treatment. I am sorry this is happening to your wife. Don’t feel shy about joining in. I think my husband is sometimes more affected by what is going on than I am. He is a great helper but I think he often feels helpless because he would rather fix the problem for me and he can’t.

[friesianfan in reply to Red71]

Thanks for your encouragement and for sharing your experience with tremors. Glad to hear that they quieted down in your case!

[SpongebobMom]

Could be an electrolyte imbalance. Make sure she's getting adequate magnesium, calcium & potassium.

[friesianfan in reply to SpongebobMom]

Thanks for your suggestions. I will check into this, especially as I know she is often low on potassium in her monthly blood work. Appreciate the response!

Dave

[blms]

Dave,

I am so happy to have you join our communications. I understand how painful it is to have someone you love so deeply go through this struggle. I have been on both sides and I know how important it is to find someone to talk to and share trials and joys that come from the simplists things.

[blms]

Are you in Boston?

[friesianfan in reply to blms]

Thanks for your note and for understanding! Yes we live north of Boston and are fortunate to be so close to Dana Farber.

Dave

[blms]

I live outside of DC and I’m treated at Georgetown Lombardi. I did request a second opinion in the beginning of my current diagnosis,

And was extremely impressed with the thoroughness of their background information requested by me. If my diagnosis changes, I will definitely be coming to Dana for suggestions. How old is your wife?

[friesianfan in reply to blms]

Hi again--when you mentioned Lombardi, I remembered we had a more detailed conversation when I first joined the site, back at Christmas time. I had mentioned that I grew up in WI during the "Lombardi years"--and I think your son was going to be married this spring. Our only daughter was married this past summer and it was definitely a goal my wife focused on! As she is 61, and definitely feeling all the effects of the meds and the intense fatigue, another major goal is getting to retirement. So we are working hard on our plans at this point and hopefully that might happen by the end of this year.

Dana Farber is really awesome and if you do decide to have a consult, I would highly recommend Dr. Nancy Lin. As mentioned in other posts, her presentations have been shared on this site in the past and she is the real deal--incredibly patient-centric, while still being a world-renowned researcher.

I can't remember if I mentioned before, but we lived in VA when we first got married almost 40 years ago. We lived in Fredericksburg but loved to go up to Georgetown or over to Annapolis. VA was also where we first started a lifetime of sailing together. We had two boats in the few years we lived there and eventually moved up to a larger boat that we had for nearly 30 years--and we even lived onboard in Boston Harbor twice between house moves! Since our horse years may be coming to an end in the not so distant future, we are considering getting back into sailing mode--a little easier as we age and also deal with Jill's condition. This became even a little more likely earlier this week when we did a quick getaway to Hilton Head to visit friends who have retired down there--and Jill and I got to sail "Stars and Stripes", the 66' boat that helped wrestle the America's Cup back from Australia in 1987, after we lost it in 1983, following the longest winning streak, 132 years, in sports history! It was really awesome! It was so great to see Jill get behind the wheel as well, after some coaxing, and it all came back to her like it was yesterday. It was...a moment!

Thanks again for staying in touch,

Dave

[The-artist]

I have tremors some a little stronger than others but I’m on Arimidex but what really messed me up was the shot for bone strengthening. I told dr I won’t take the anymore. I jerked and twitched and had spasms really bad for almost a month continually. It was horrible. I be an thinking maybe they gave me something else by mistake.

[friesianfan in reply to The-artist]

Thanks for your comments. My wife has Zometa infusions quarterly and the first one was a real bear, but they got better after that, especially with a much slower infusion rate. The spinal MRI and brain MRI did not yield any results, so she is going to a neuro-oncologist in a couple weeks to see if they have any other ideas.

I'm sorry you had such a bad experience with that shot and I hope your symptoms will continue to get better. Thanks again!

Dave

[Hidden]

Hi Dave and wife. I am on Letrozole and Ibrance and have tremors most days. When I’m worried it’s worse. Sometimes my left hand just does it’s own thing. My legs are ok. Sometimes my body feels like it’s in shock mode and seems to tremor slightly. I also have mets to my spine, pelvis, ribs and skull. I thought it was only me that has this feeling so I am pleased you posted on here. Take care both of you. Cheryl