› Forums › General Melanoma Community › Anyone’s bone mets get so bad they need a pain pump?
- This topic has 14 replies, 7 voices, and was last updated 5 years, 2 months ago by
casagrayson.
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- January 17, 2019 at 1:10 am
I’m already on 300mg of fentanyl with available oxycodone 30mg for overflow every 4 hr as needed. Well for awhile it was finally enough the pain was finally being managed and I could come and have a semi-normal day. Well my pain has gotten a lot worse this week and I just had a CT scan and x-rays so I know I have progressed but not in those areas. But my pain has been back to a 4-6 almost all day this entire week.I have already been approved for an intercostal pain pump which is basically my next step if I want any other form of relief. And before anyone suggests it, yes I am an active cannabis user already, it doesn’t come close to touching what I got. It helps relax amonst other things but pain not anymore, my bones are just too eaten up.
So, my question is experience? Anyone else on the board have this procedure and were you happy with the results? Any reasons that I shouldn’t get it?
I’m starting to get this strange feeling that there may not be an exhorbarant amount of time left and I definitely want to at least be comfortable enough to enjoy time with my family.
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- January 17, 2019 at 12:09 pm
Jeremy,
i am writing on behalf of my husband who is sleeping in the bed in Hospice care. He has Mets to his spine, brain, bones, and liver. We are here now not only due to the seizures he is having but also due to issues from all the oral pain meds he has had to take in addition to steroids and other pills. We were never offered a pain pump, but i believe we would have done it given the option. His pain not being under control has caused us to miss much precious time together. He is only 47 and had a lot planned. I noticed your other posts and did not reply, however I would say hope and pray for the best but always stay ahead of the pain anyway you can. Enjoy every second with your precious family. None of us knows when our time will come, but we can make the best of the time we do have.
Wishing you a long lifetime of health and happiness
Erica(wife of Vince)
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- January 17, 2019 at 10:52 pm
Erica,Thank you so much for sharing Vince’s story with me. I had already decided last night that I’m going through with the pain pump as long as my clinical trial doc says it’s okay and won’t disqualify me. However, this story would have put me over the top if the pain last night hadn’t.
I’m only 35 and having to be on this much med for what’s looking like years to come. (Assuming I fight it off for that long) There is no doubt it’s going to start causing damage to my liver. The pain is only ever gonna get worse, I don’t need more and more meds. The pump is suppose to significantly reduce the dose but use it more effectively.
Also, you are the first and only one to respond to me about this which tells me that the scale of Vince and I’s bone disease must be kinda rare, at least I hope so because I know how terrible it is. So, I’m sorry for what you and your husband have had to endure. I know how strong my wife has had to be for me and my girls and there is no way I would have survive the last 2 years without her. So thank you for being you, your a strong woman and I hold nothing but respect for that.
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- January 19, 2019 at 4:01 am
Change your diet…….you have absolutely nothing to lose and everything to gain!!! I've emailed you before. You need to be willing to help yourself.
Melanie
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- January 19, 2019 at 4:16 am
I respectfully disagree. There is no blame, just a strong suggestion which I applied to my own circumstance when I was on a brink of death few months ago. If I coule eleviate any suffering to even a single person with not just melanoma but any other cancer or illness then I will be happy. I am just trying to help.
Respectfully,
Melanie
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- January 19, 2019 at 4:35 am
Although I agree that pain management is of the paramount importance, it will only mask the symptoms and not alleviate or get rid of the real cause of pain. Why being so resistant to something that may adress the real cause? This is why I suggested what I did. Try combat the issue from multiple angles.
Celeste you can interpret my words any way you like. I know the reason why I am on this forum and it is to share my experience and info with others like myself and if I could help a single person I will be happy! Nothing less, nothing more.
Melanie
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- January 19, 2019 at 4:17 am
Hey Jeremy,
I had an epidural that helped me get through surgery that removed the upper lobe of my lung in 2010 and had another to help with pain when I had abdominal surgery in August. Not the same pain nor intervention you are currently facing, but I would certainly avail myself of any pain control options I could access if I were in your position. I hope you find something that helps soon. Yours, celeste
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- January 21, 2019 at 12:52 am
I’m planning to get the pump as soon as possible….I was basically given my death sentence on Friday. Went to UofM for my second opinion and was told that I don’t qualify for any clinical trials nearby because of A. How advanced my melanoma is and B. I’m bed bound more than 50% of the day.
They have already exhausted all current effective treatments on me and my melanoma keeps finding a way around it. I’ve done 16 rounds of pembro, and all 4 ipi/nivos. They have told me that I can take temadar to try to slow progression and gain a little more time with my family but I need to get the pump first because they don’t want me having surgery after I start chemo for obvious reasons.
She forcasted that “without a crystal ball”, this is very likely my last year. That she was surprised I had fought as hard as I have and did this well based on how bad my Mel is/was.
So, I’m sorry Melanie, diet might be enough for some people but when you are missing chunks of bone because the cancer has literally disintegrated your spinal column and hip then come to me about diet. If I’m dying this year, it’s definitely not going to be in pain if I can help it.
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- January 21, 2019 at 2:44 pm
Oh, Jeremy! I am so sorry. I totally agree with getting the pain pump and hope it helps. I don't know if these ideas will help or that you are interested, but given your by-line and your amazing spirit….this is what also came to me…
1. Temodar might give some relief.
2. T-VEC, an intralesional, is FDA approved, so could be administered without trial participation. In patients with lesions that could be reached for injection, it has been known to kill that lesion as well as those that are NOT injected (categorized as 'by-stander' lesions). I don't know that it would help, but it's a chance! Here are two links:
https://www.cancer.gov/news-events/cancer-currents-blog/2015/t-vec-melanoma
3. Right to try laws have been passed. It is a federal law and there are additional similar state laws. They were created specifically for folks in your predicament. Stuck in the spot of "being too sick" to qualify for a trial, but clearly in desperate need of treatment!!! If you choose to look into that, it could mean that the pharmaceutical company would have to provide that treatment to you. It's a long shot…but thought I'd throw it out there. Here's a link with more intel:
http://righttotry.org/rtt-faq/
There is also this ~ I don't know anything about these folks…Early Access Care…a company that supposedly "accelerates access to investigational drug products to patients in need"...their number is: 888-315-5797. There is also an email address: [email protected] I don't know what their financial stake in all this is and am NOT advocating for this company. But… You should be able to talk to your doc about your wish to participate in "right to try" legislation and THEY should work to help you attain access should you wish it.
4. Finally, there is grace and strength in finding acceptance to that which we cannot change. I know you possess those qualities and more and that you will know when that time is right for you.
I am holding you and yours in my heart as you face all these difficulties. I wish that there was something more that I could do. Ever yours, celeste
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- January 23, 2019 at 1:25 am
Thank you Celeste,I’ve always appreciated what you bring to this forum and the attentiveness that you grant every post on this site.
I am planning on using the Temadar after I heal from the pain pump operation. Until then, they are going to keep me on Opdivo just in case it’s still working to a degree.
As for T-Vec, I spoke to my Mel Doc at UofM and she explained that while we could probably do T-Vec for the subcutaneous tumors but that T-Vec is a singular treatment and so it wouldn’t affect the rest of the disease in my body. So for now, I’m not considering T-Vec an option. Not to mention it would need to be pre-approved by insurance and from the way I was hearing it, odds aren’t good in that department.
I looked into the right to try law stuff but didn’t come up with much in the way of melanoma drugs. Most research right now is all focused on combos to get PD-1 to work.
So, I’m going to focus on getting my pain in check again as well as give me a way to go up from where I’m at. The pain is only going to get worse and if I’m already at Max opioids then I need a new delivery method so that I can get the same effect with less drug.
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- February 13, 2019 at 3:09 am
Jeremy,
I feel completely inadequate in trying to express how much I hate to hear your latest news. My heart aches for you and your sweet wife.
Just remember that these doctors don't have crystal balls. They can't be certain that this year is your last — there can always be another option waiting just around the corner. I'm glad you are getting the pain pump as you deserve to have time with your family that you can enjoy.
Stay strong, and know that you have many warriors here in your corner.
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