The stem cell transplant didn't work. Day 60 he got tumours on his back. Now he has them on his chest and sides. Has had a CT scan done to see if there are any internally. Today he has increased pain in hips and legs. Also has trouble with balance. Had spinal collapse in July and never did walk right after, but today seems worse. Is urinating, but burns to begin. Color is normal. Think he is a little dehydrated.
Anyone know early signs of organs being compromised?
Forums
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
Re: Day 87 post transplant - tumors, increased pain
I'm sorry things have not gone well. Two things that jump out to me. First, you seem to feel his overall condition is poor.That's a red flag for me and I always trust my gut in those circumstances.
Secondly, burning when urinating is often a sign of infection and should be checked right away. Urinary tract infections can really affect the way you feel, and if that is what he has, he may feel a lot better. It won't change the myeloma issues themselves, but you don't need an infection clouding the issue.
Best of luck to you.
Secondly, burning when urinating is often a sign of infection and should be checked right away. Urinary tract infections can really affect the way you feel, and if that is what he has, he may feel a lot better. It won't change the myeloma issues themselves, but you don't need an infection clouding the issue.
Best of luck to you.
Re: Day 87 post transplant - tumors, increased pain
Things have gone poor. Apparently we are running out of options. If the CT scan shows tumours are affecting organs on Tuesday, he will not be eligible for further treatment. If his organs are not affected, he will be starting Velcade 2 times a week, dex 4 days on 4 days off, and Pomalyst [pomalidomide] daily.
It took 8 weeks before his disease figured out Revlimid and it was no longer effective. Hoping this regimen will last longer. There are no trials he can go into here. He is not eligible for another stem cell transplant. We have been told to prepare. The wait till Tuesday to see if his kidneys are okay is driving us crazy.
It took 8 weeks before his disease figured out Revlimid and it was no longer effective. Hoping this regimen will last longer. There are no trials he can go into here. He is not eligible for another stem cell transplant. We have been told to prepare. The wait till Tuesday to see if his kidneys are okay is driving us crazy.
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
Re: Day 87 post transplant - tumors, increased pain
Hi Terrilynn, I really hope that the Velcade and Pomalyst are effective for your partner, and that he starts to improve soon. They are both very good anti-myeloma drugs, and maybe this approach with both an IMID and a PI will help. Sending positive thoughts your way ... stay strong!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Day 87 post transplant - tumors, increased pain
Really sorry, you said that he might be able to get treated with Pomalyst/Velcade. I hope that is the case of course!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Day 87 post transplant - tumors, increased pain
Darryl passed away on May 17. The SCT didn't work. The disease fought back hard and tumours were throughout his body. He went to sleep on May 14 and didn't really wake up again.
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
Re: Day 87 post transplant - tumors, increased pain
Terrilynn, I am very sorry to hear about Darryl's passing. I know you did everything possible to help him. I hope that your good memories of your time spent together help to sustain you at this time of sorrow. Thanks for letting us know about this too.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Day 87 post transplant - tumors, increased pain
Hi Terrilynn,
I'm very sorry to hear about Darryl passing away. My heart goes out to you. Myeloma is a very unfair and unpredictable disease. I hope that you may find some peace knowing that you were there for him. No matter how much we try, there are some things that we just cannot control.
My thoughts are with you,
Joy
I'm very sorry to hear about Darryl passing away. My heart goes out to you. Myeloma is a very unfair and unpredictable disease. I hope that you may find some peace knowing that you were there for him. No matter how much we try, there are some things that we just cannot control.
My thoughts are with you,
Joy
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Day 87 post transplant - tumors, increased pain
We are so sorry to hear of Darryl's passing, Terrilynn. You have our sincerest condolences, and also our gratitude for providing us with an update.
If members of the Beacon community can offer any further advice or support, please let us know.
If members of the Beacon community can offer any further advice or support, please let us know.
Re: Day 87 post transplant - tumors, increased pain
So very sorry for your loss. Hardly seems adequate. But it's heartfelt. I wish I had some words that could make this easier for you. If you need to talk to people, we all continue to be here.
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