Bone Mets Thread
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Philly- I'm sorry to hear about the Xgeva. My insurance did the same thing, it denied it and requires that I try and fail on Zometa first. I've had one infusion over the course of an hour and am going to talk to my MO about what constitutes "failure". I have terrible veins. It took an IV therapy nurse twenty minutes using a guide wire to get an IV started on me so they are recommending I do a port placement if I am to continue on this. I hadn't heard about the Claritin, I am going to try that next time. I had the expected Flu-like symptoms for three or four days afterward and since then have mainly noticed a significant increase in my fatigue level and general pain. I have also had increased constipation. I guess those are not horrific but definitely a quality of life issue.
DodgersGirl - I had rads to the spine and right hip when I was diagnosed in November with mets. I would say my hip is just now getting better. I had also had a rod surgically placed in the femoral neck and femur so I can't for sure say the pain relief isn't also surgical healing. I've been doing PT for several weeks and that has helped. I'm almost walking without a cane now. I also use the SalonPas and take the Norco 5/325 about every 12 hours and supplement with Aleve or a combo Tylenol/Ibuprofen if it's too unbearable. The pool and a heating pad on my hip and back are the most effective for me in terms of non-medication interventions. That really seems to work for me. The rads to my upper back, T7/T8 didn't help at all. I had a recent MRI that identified another met to T12 and L1 that weren't there on my December PET and bone scans. I'm being told that they may have been there and just not identified until we did the MRI. In any case, I have to see my MO March 3rd and I'm not sure if this will be considered a progression or not. I'm in the "suck it up and deal" mindset right now.
This was a good week. I got cleared to go back to work although am very restricted. I have a time limit of 6 hours and a lifting restriction of 5 pounds in a mostly seated position. Not sure what that's going to look like. I won't be able to go back to my ICU job but am hoping I can maybe work in a clinic or infusion services. I have one week left on my FMLA so am taking the time to go visit family in Arizona now that I am more mobile and feeling better. This will be my first time traveling since my diagnoses so I'm excited to see my family and get some sun and warmer weather but am being cautious about how I will handle the added activity too.
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emac877– your post gives me hope that later this year I might be able to travel. On my bucket list is a trip to a beach. I want a hotel room that faces the ocean and want to be able to sit on my balcony and hear the waves breaking. MO told me to take that trip sooner instead of later but right now don’t think I could make the road trip there and back.
Hoping the T12 L1 isn’t progression for you, that your MO is right.
I have a compression fracture at T12 unrelated to cancer. Rads to T4 to T9 helped my back pain. Waiting on rads to left and right acetabulums to quell the pain. Your post gives me hope that relief could still be coming my way
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Two years ago I was in a back brace and using a walker, next month I am going on a cruise with my husband and daughters. I didn't think that I would ever be able to travel again, but away I go!
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Peaches - yay! That sounds amazing. DodgersGirl - I hope you feel better and can get to the beach soon. I hope all of us get a break now and then to do something fun and relaxing. I know it helps keep me focused on the positive and not get too down on the day to day struggle.
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BigPeaches- wow. Congrats on planning a cruise next month!
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I wish we had like buttons so I could like or thumbs up so many of the informative comments and good news that is shared here.
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I hope ya'll don't think I was bragging, I just wanted to give someone some hope that things do get better. I was in a really bad place when I was first diagnosed, it took a good while but I am doing so much better now. I still have limitations but I can enjoy life
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helenlouise...I so agree. Been saying that for awhile now.
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Hello, glad to see that you could do gyms now. May I ask how you copied with hand foot syndrome and which products your doctors recommend? Thanks a lot!!
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Just wanted to post that earlier tonight I agreed to meet other half at the pub after work. I was halfway there when I realized I had forgotten something.
My crutch.
I up and walked out of the house, down the road, up some stairs and about five minutes of walking before I noticed I had no walking aid whatsoever - no crutches, no cane. Not a niggle on EITHER side. So I just kept going, sat down for an hour and then got up and walked home with him. A little stiff getting up but otherwise fine. And this after a few days of cranky pain and left side neuropathy after physical therapy Tuesday and wobbly legs after injection day yesterday.
This is four months out from fracture and about 3.5 months from radiotherapy. I don't know if its because I popped the joint on that right side last night or the strengthening has kicked in or what, but its like a switch flipped.
So - if you are struggling with post therapy mobility issues there IS hope, it just takes time! Don't give up and keep on trucking, doing what you can do when you can do it. Strengthening is so important and while there will be set back days, there are also days when you will see the cumulation of your hard work too.
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Thanks for your reply, DodgersGirl. I have the Lodocaine patches but they haven't helped much. Like you, my insurance wouldn't cover the 5% so I have the OTC 4% patches. I've just discovered a CBD Cooling Relief Stick made by CBDistillery that I'm getting some pretty good relief from. I got it at a reputable local pharmacy that chooses its CBD products carefully and has them tested independently. I'm also using CBD oil made by the same company and with the approval of my doctor. The jury's still out, but I'm going to stick with these products consistently and see what happens. It's "buyer beware" with CBD products so purchase with caution! But they are another non-narcotic option.
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Gosh I have a reply for everyone here. You all are so smart and supportive!
I, too found out that I was stage 4 breast cancer metastasis to bone with a biopsy of a skin lesion on my thigh. Very odd.. I am on Ibrance and Letrozole for a year now with NAS. so for now stable. Except I did get another lesion on skin lower than the rib. But it faded and does nothing. Now I have discovered a lesion on the exterior of my cheek bone. I thought it was a pimple that was popped and grew a scab in the middle of a small reddish round area about 1/4 inch or less in size. So the "pimple" does not heal and scab will not be scraped off. So I am really down and out at this time. Who wants anything on their face! I can also feel two more "zits" under the skin nearby.
I do need to be brave. Like I've been doing. Love you guys!
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TNMTNGAL, Thank you for sharing the info & photos of your compounded prescription! I'm so glad it has provided you with tremendous relief!! I have Diclofenac Sodium Topical gel 1%. Thinking what you have may be even more effective and will ask to try it.
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Thank you, sadiesservant. I’m on my fifth day of Piqray, and so far, so good! The only side effects I have so far is extreme sleepiness and some nausea. I also have seem to have lost my appetite, which is perfectly fine with me! I was on prednisone to treat the pneumonitis I got from the Ibrance, and have gained a lot of weight.
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BigPeaches - you are not bragging, just hopeful and encouraging. Congrats on your improvement.
Angelique - I had awful hand foot syndrome from Xeloda, so I was switched to Kisqali. I put Bag Balm on my palms and soles, then wore socks and gloves. Took a while, but it all cleared up. Sleeping in gloves is annoying, but I needed it. Bag Balm has a weird smell, but really seals the skin. It was developed in 1899 "...originally, it was used for only cows' udders, but farmers' wives noticed the softness of their husbands' hands, and started using the product themselves..." (from Wikipedia)
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Peaches, We are all celebrating your cruise, making memories with your family are what its all about!! I don't miss an opportunity to do any little thing with my kids, these are the moments that count the most.. Hope you are traveling somewhere exotic, but I'm sure days out floating on the gorgeous ocean and swimming in the pool and drinking a margarita are divine as well...
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Does any one have a problem with neuropathy in your feet with lower spine mets? This is starting to happen to me, slight burning and toes go numb.
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Janice54...yes, my toes are numb on both feet.
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Not on my mets side but on my prior-herniated side I have stenosis (spinal canal narrowing and degeneration). I think it took a bit of a hit when I had rads to the other side and its been cranky since, so I get burning big toe and occasionally burning top of my foot.
Look up a dermatome chart - it will show you what nerve impacts what part of the foot.
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I have some residual neuropathy from the Taxotere/Cytoxan I had in 2018. Two of my mets are lower, one at L1 and one in the right femoral neck. I feel like since I started on the CD4/CD6 inhibitor the neuropathy has been slightly worse. Not sure if it's the meds or the mets.
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hi everyone!
Finally spoke with my MO regarding my long awaited Petscan results.
There appears to be a new met on my sacroiliac region that he's estimating is about 2cm. And some lighting up along my thoracolumbar spine.
I am bummed! I really want to hear NED 😢
I may have to undergo some radiation to zap a couple spots. And probably will need to change treatments soon 😞
How have folks done with the zapping?
Thank you!
Philly
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Hi, Philly - sorry about the results but I can share good news about the zapping! I had rads to one spine met (L1) last May-June. 10 sessions, EBRT
My PET scan after the rads was in October, all clear. No big side effects for me except fatigue, especially the few weeks after my sessions ended.
My next scan will be coming up soon, hoping for good results.
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Olma thank you thank you so much for responding! I really appreciate hearing your experience!!! That is sooo encouraging!! I am sending you so much love for that upcoming scan to continue to be CLEAR!!
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I had 3 SBRT sessions on my L2 which was successful. Initially my RO team was debating palliative radiation which was at least 10 sessions. I would push for the SBRT. You got this.
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thank you tinkerbell!!! That’s awesome to hear?
What is the difference between what olma had (EBR?) and what you had (SBRT)?
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How it was explained to me that SBRT is precision medicine, meaning more precise targeting the area at a high dose of radiation in 3-5 sessions. I don't know much about EBRT except it was longer in duration, standard of care. SBRT can zap multiple areas, with minimal side effects. However I was informed about potential tumor flares which didn't happen to me. I would at least have the conversation with your RO.
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ah okay thanks tinkerbell. I am taking notes
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Yes, I would have liked the SBRT since it is more precise but my insurance would not approve it in my case. But, see if you can get it.
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Huh - I guess I got SBRT to my SI joint then. Five sessions right on top of it. I did get a fair amount of diarrhea afterwards for a few days, but nothing some Immodium couldn't handle. I'd want to get on top of anything to do with the SI joint because lemme tell you, rehabbing this thing after fracture has not been fun (but its getting there). Nip that in the bud!
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My MO told me that SBRT is used for precision radiation and is used often for brain tumors. If your tumor is over a certain size, SBRT is not an option. I can't remember what that size is but your MO and RO will know. My bone met was too large for SBRT and I did a wrap around radiation.
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