Bone Mets Thread
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kbl I remember you mentioning the Facebook page and I found it awhile back. Thanks for that.
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hi friends - it's the friendly troll that lives under the bridge, quietly checking in periodically and reading/absorbing the latest shares. it's comforting to see familiar names in the discussions i follow, particularly @amontro - i truly would like an update as to how you are faring with your onj. what brings me to the board today is a question: does anyone in the Los Angeles area have or know of a dentist who has experience with our issues? i've been dragging my feet on getting started with zometa, and have spent the last 8 months getting a compression/burst fracture in my L1 sorted out. so my oncologist says it's time to get that drip going and i need a dentist now who i hopefully can trust going forward. btw @amontro am i remembering correctly that you may have mentioned you would have never started with the zometa if given the chance? i could be recalling incorrectly. at any rate, i'll probably post this same query on another relevant forum and hope so much i might get a referral.
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@divinemrsm how are you doing with your pain and rads? I had 2 zaps to T11 at UPMC Magee in 2020. They put me in a tight cocoon of plastic and sucked out all the air to keep me from moving during the radiation. It takes longer for the setup than anything. The rads were very quick. I had very few side effects other than the normal radiation fatigue. I’m hoping you’re having minimal issues as well.
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cyathea, thanks for asking about me. I didn’t realize you go to UPMC Magee! I go to AGH. Pittsburgh offers excellent medical care, and I’m grateful for it. Here’s what’s been going on:
This is a positive post, but I’m gonna start by saying “pain is a bitch”. Taking a small amount of stronger meds for the pain I was having in my back made ALL the difference. The radiologist prescribed dexamethadose, one 4 mg pill twice a day. The pharmacist said it was a strong steroid. I have a sensitivity to medicine, so I only take a half a pill in the morning, 2 mg, and it’s all I need to alleviated the pain. But what a difference from just taking Tylenol. And it gave me energy I hadn’t had before. The pain was causing me to fear the cancer was taking over everything, which caused depression, I wasn’t physically able to do much, and it was like a downward spiral.
Then I got a call to get the radiation started, and since the steroid was working, I drove myself to Pittsburgh for two sessions last week. I have three more sessions. I have a customized vac-lock bag that was fitted around me which I lie in each time. It goes smoothly.
But….then dh was having trouble breathing one day this week, I got him to the ER and he had Covid. They gave him Paxlovid and he’s pretty much okay now. I tried my best to isolate from him, but ended up at the ER a few days later, diagnosis: Covid; now on Paxlovid. Geezzze! But I am doing okay.It’s really odd, because I do not know if the pain I was having in my back was a precursor to Covid, or caused by the mets, or exacerbated by the radiation, or a combination of these factors. I didn’t think I had Covid, just a cough from the thoracic rads, a possible side effect. But then I took my temp and had a fever. It surprises me that the Paxlovid is helping me feel better. I’m breathing better than I have in a couple weeks. Right now I’m in no pain so even tho I feel slightly under the weather, I’m pretty content.
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Hello divinemrsm and all on this thread…I’ve not logged in for awhile. Been recovering past 8 months from Affinitor causing lung toxicity (pneumonitis) and having no treatment except a few rads on my spine for 8 months. Now the cancer has taken over my whole spinal column and I can’t walk from the pain plus it’s showing up in my peripancreatic lymph node. My main oncologist thinks Xeloda is next for me. I see divinemrsm you are on Xeloda - how is it working for you and for how long? I hope you’re doing well on it. My radiation oncologist doesn’t want to radiate anymore since he says I’ll need all my bone marrow when starting back on chemo. I would like to hear from anyone (good or bad) on Xeloda. Please and thanks……Sharware
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Hi @sharware, I'm butting in here to let you know I'm happy to hear you recovered from the pneumonitis. According to pneumotox.com capecitabine doesn't cause many lung problems; rarely granulomas but usually they don't lead to SEs. I hope you find Xeloda tolerable and effective. Maybe you can make it to the Ocean City boardwalk sometime. Maggie
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Hi Maggie! It has been a long year being off any chemo and on supplemental oxygen for all this time. I’m afraid the cancer has taken over my whole spine and both hip bones plus my peripancreatic node. I am walking with a walker now from pain in my lumbar region. I’m seeing a pain management doctor this week and hope he can give me some relief. I’m worried we may have waited too long for my lungs to clear up. You have a good memory….wish I could get out to the boardwalk sometime. Maybe if Xeloda kicks some of this cancer…time will tell. But thanks for the info that Xeloda shouldn’t hurt my lungs. Plus the link too so I can check. Hope you are doing okay and hanging in there too. ❤️ Sharon
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sharware, wow, you have quite a story, being off chemo for a year? Was that due to the pneumonitis? It would be great if the Xeloda could get in there and stabilize the spinal mets so you could get some relief that way. Xeloda has been a very tolerable treatment for me. My side effects are minimal, no diarrhea or nausea; manageable hand and foot syndrome which I keep in check using creme and vaseline. I’ve been on it since 2020 with some recent progression to the spine, as per my above several posts. I finished the five rounds of radiation to the spine this week and have scans scheduled early next month to gage the effectiveness. So I’m still on Xeloda.
The radiation has kicked my butt. I had a lot of pain and have used both oxycodone and dexamethdose (a steroid) to help, which it has. The jury is still out as to whether the radiation will be effective enough to eliminate pain and the need for pain medication. I have to give that some time.
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Hi @divinemrsm, thanks for responding. Yes, the everolimus caused me severe pneumonitis after taking it for just one month last year from Nov. to Dec. After being hospitalized, my mo stopped the everolimus, put me on supplemental oxygen and steroids (two rounds) and CT scans showed scarring and glass opacities in both my lungs. It took 3 months to see a pulmonary specialist even though my mo ordered it STAT. After Covid, most of the pulmonologists here retired or moved, so that didn’t help. It’s taken until now for me to get off the oxygen (except still on it at night). Of course, being off any cancer medication allowed cancer to progress. My radiation oncologist said he hesitated to radiate my spine because it would deplete my bone marrow. Now that my mo plans to start me on the new chemo Xeloda, he said chemo would deplete my bone marrow BUT my mo thinks radiation would help kill the cancer in my spine. Huh?
I’m sorry to hear your cancer has shown a slight progression. Hope your scans are better than expected. I’d like to ask what dosage you are taking of Xeloda and if it’s 7 days on and 7 off? And please let us know if the radiation helped? 🙏 Great to know your side effects have been tolerable on Xeloda. I’ve read on the Xeloda Facebook page that Preparation H helps prevent the H&F syndrome. I will get a tube to use just in case. Also do you have any anemia caused by the radiation? At least it would be great if your pain has been eliminated or reduced. Fatigue from the radiation will get better in time…hopefully you already feel better.
i did see a pain management doctor yesterday and he can’t see me for an injection in my lumbar region until Oct 7th. He’s booked up. So many people are in pain. I want to walk again without using a walker. I know there are no guarantees but I’m hoping. My spine is a mess with cancer and bulging discs, so don’t know for sure what’s pressing on my nerves causing sciatica. He’s ordered an MRI to help with a diagnosis, which hasn’t been scheduled yet. It sure is depressing.❤️🩹 Sharon
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