NCI update and pain in fingers - SHARE Metastatic ...

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NCI update and pain in fingers

Snowcone16 profile image

Hey Everyone,

I hope everyone is feeling good - mentally and physically! I have been pursuing the trial with Dr Rosenberg at NCI that cured Judy Perkins and another of stage 4. The first inquiry it was only in my bones. They needed a 1cm tumor that could be harvested. So, after my follow up scan with Mets to liver, I reached out. Those Mets were smaller than a half cm. But the one on my scalp is 1 cm. They gave me follow up questions and info. For example, you stay with your current oncologist. You would do this trial sort of in between meds. It requires a 3 week stay in Bethesda. Then prior to implant, you do one round of chemo to set the environment. I was interested —all in. Well, because I have an autoimmune disease of my biliary ducts, they said it was too risky. So, while I can’t participate in trial, I hope it can get approved quickly. I think this is what will help me. So I’m in a funk dealing with that rejection for moment.

Separately, been on afinitor and exastamene a month. In the past 2 weeks, I wake in the morning with my left hand fingers cramped. It’s painful and feels swollen but there is no swelling. Google tells me it’s arthritis but I’m convinced it’s linked to my meds. If it’s the only pain to deal with goes away about an hour after waking up. I’ve also had bad headaches. I’ve previously been a migraine sufferer. Dr ordered brain mri but I declined. I’ve got no other symptoms and honestly don’t need to get worked up about that scan. I know I have a tumor at my C5 and think at night when I lay that it’s hitting a nerve. Maybe I need an adjustable bed...

In case you wondered, I’m 47 years old! Hoping to shake my funky feelings. Love and hope to you all. ❤️

13 Replies

Hold onto your positive attitude that helps sometimes as much as meds do. Sending you prayers.

Sorry the trial did not work out for you. I sometime get awful cramping in my hands -- they actually spasm and you can see it. The pain is pretty bad and I sometimes have to forcibly open my hand to relief the spasm. Doesn't feel swollen. I never had that before so I think something funky is going on with meds (Ibrance and Faslodex). It hasn't happened recently...guess I just jinxed myself. I just searched high and low for a new mattress. I considered adjustable, but they are pricey, especially the Sleep number. I was going to buy a memory foam hybrid by Nest. Went to the Nest store in NYC and lay down on the latex hybrid bed. Sold. Got some latex pillows, too. I no longer have bad pain in my Lt hip (a little something is still in there, I have had 2 bones scans in the last 2 years, nothing), and no neck pain. I don't wake up in pain. Guess I should have done this years ago. I did wind up spending a lot for an organic latex mattress. I'm glad I tried the bed, 'cause I was thinking memory foam hybrid, and it was a bit too soft for me. My husband and I are, shall we say, a bit corpulent. Go out and try some new ones and see if you feel a difference. A year ago I almost bought a sleep number. It was really comfortable. But decided to go with "regular" mattress. Whatever works. I hope your mood lifts soon. This rollercoaster sucks. And I don't use that word often, but it really says it all. Sending hugs.

Hugs, love amd prayers to you.

Hi Snow-Also, sorry the trial didn't work, but thanks for the information. I'm going to mention to my dr. today. Sometimes my hands and other joints will lock up, be painful. I was told it's from the hormone blocking meds. Without estrogen, our joints (as well as other parts) aren't lubricated as much and have more difficulty. I've been taking a high grade tumeric supplement that has seems to help, FWIW. All the best to you.

Snowcone16 profile image
Snowcone16 in reply to lynnhbtb

I’ve just restarted my turmeric and it’s not as bad the past days. Stiff but not painful in my left fingers. I’m going to double up from 1700 mg. I use organic turmeric capsules from amazon.☀️


I was on affinities and examestane for 3 months , had no side effects what so ever. But it did work for me at all and had massive progression while on it. I think that you assumption about the pressure on your arm while you sleep is correct. You may want to keep your arm on a pillow while you sleep.

I wish you the very best of luck with this treatment . I’m very interested in the study to mentioned, I have at least 3 liver Mets measuring bell over 1cm, but can not go without chemo due to significant progression. I’m actively looking for trials but many require less exposure to chemo than I have had.

All the best to you.

Snowcone16 profile image
Snowcone16 in reply to meshare

Google around. If you have trouble finding info, message me. I have the direct number for nurse. She responded to my emails to Dr Rosenberg. Pretty responsive— only missed responding to one email. I resent it then she called me.

I have the same pain in my right hand. My summarize is that it's the Xgeva shot activating underlying arthritis .

In any case here is what I do when the pain gets too bad and my 3rd and 4th finger get too stiff and after sleeping sometimes they lock up. I use KT Tape (Kinesiology Therapeutic tape). It really helps and the pain and stiffness go away w/out taking any medication.

I stretch the tape across the bottom of my palm and then another from the base of my wrist and bring it thru my thumb and index finger to wrap over the tape at the base of the palm to the outside of your hand.

How ever it works for you, play around with it. It's affordable and you can get it online or in local stores.

KT Tape/Elastic Sports Tape.

Check it out, it's worth a try.

Snowcone16 profile image
Snowcone16 in reply to JoyBe

I will look into the KT. The double dose of turmeric has relieved it from pain. Now just stiffness and sore. But it’s fine after an hour awake. I guess it could be xgeva - a new side effect I guess.

I can live with I won’t complain.

Thinking about you and hope things get better. You have a great attitude and I know sometimes you get sick of hearing how that helps but I do believe it does. Best to you.

Snowcone16 profile image
Snowcone16 in reply to Kimr2081

Never got tired of hearing that...sometimes I do need a reminder “yea, I DO have a great attitude “. ⭐️ Hugs

I live next door to NIH in Bethesda. If you do get here, I will meet up with you, etc.

Please keep me updated.


Snowcone16 profile image
Snowcone16 in reply to blms

Definitely will! ☀️

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