Hi all,
My boyfriend Chris, 48, was diagnosed with multiple myeloma in January after a botched thoracic vertebroplasty with subsequent laminectomy in December.
After chemo (Velcade, Revlimid, dexamethasone) he is officially in remission. His last treatment was three weeks ago. He had only mild side effects from the chemo, but now he is tired all the time.
The neurosurgeon who performed his back surgeries did an MRI about a month ago and said everything looked fine, but my boyfriend complains about continuing numbness from his knees down and lately about increasing back pain. I keep telling him to seek follow-up care with an orthopaedist, preferably someone who has experience with myeloma patients, but for some reason it is extremely difficult to get him to do anything beyond what the surgeon (or the oncologist) tell him to do -- and those guys seem to have tunnel vision.
I'm exhausted after getting him through two back surgeries (the second one followed by a two-week hospital stay), a med-port "installation" (for lack of a better word) gone wrong (infection set in after first use for chemo and he had to spend another week in a hospital) and chemo, all the while working a full-time job. I exercise at least 5 times a week and I eat well, but I wake up 2-4 times every night, and it's getting harder and harder every day to function on the job. I work in a two person office, so even if I could take some time off every now and again, my work just piles up while I'm gone and I have to work twice as hard (or fast) before and after my vacation to prepare/catch up.
On top of all that, financial worries are beginning to emerge because he's been unable to work (he drives a truck) since December. He was on short-term disability these last six months, so we were okay, but now they're switching him to long-term disability and we don't know how much that's going to be. The only thing we know is that he'll go from being paid every week to being paid once a month. I don't make enough money to cover the house bills plus groceries plus his medication. I have enough savings to pay the mortgage by myself for a few months, but they're in a mutual fund that took a beating during the Great Recession and is just now slowly recovering.
Long story short: The good news of his being in remission is overshadowed by the cares and worries of everyday life.
Thank you all for bearing with me! I'll appreciate any words of wisdom you might have for me/us.
Best wishes to all of you out there dealing with multiple myeloma!
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9 posts
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Nico1908 - Name: Nico1908
- Who do you know with myeloma?: My boyfriend
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 47
Re: New member in Florida
Hello Nico,
I'm sorry that you and Chris are now members of the "myeloma club," and I'm very sorry for all the stress you've experienced, but I appreciate your sharing your story with all of us.
It's great that Chris responded so well to his treatment. As for the numbness he's been feeling in his legs, it is probably due to the Velcade that was part of his treatment regimen. In a lot of cases, the numbness or tingling that can be a side effect of Velcade will go away with time, so there's a good chance that it won't be permanent.
The increasing back pain you mention, however, would concern me a bit (although I'm not a doctor, so take what I'm saying with a grain of salt). Is there any chance it's due to Chris trying to do more than he was doing before, now that he's done with his treatment?
If the increased pain can't be explained by increased activity, it's probably worth having it looked at closer. When were Chris's last blood tests, and did they show any change in his calcium levels?
I'm sorry about all the other challenges you and Chris are facing right now. I wish there were some easy solutions I could offer, but I'm afraid that all I can do is say that understand what you're going through, and I hope that you and Chris will find a way to work through the problems.
If there are any specific questions or concerns that we might be able to help you with, just let us know.
Good luck!
I'm sorry that you and Chris are now members of the "myeloma club," and I'm very sorry for all the stress you've experienced, but I appreciate your sharing your story with all of us.
It's great that Chris responded so well to his treatment. As for the numbness he's been feeling in his legs, it is probably due to the Velcade that was part of his treatment regimen. In a lot of cases, the numbness or tingling that can be a side effect of Velcade will go away with time, so there's a good chance that it won't be permanent.
The increasing back pain you mention, however, would concern me a bit (although I'm not a doctor, so take what I'm saying with a grain of salt). Is there any chance it's due to Chris trying to do more than he was doing before, now that he's done with his treatment?
If the increased pain can't be explained by increased activity, it's probably worth having it looked at closer. When were Chris's last blood tests, and did they show any change in his calcium levels?
I'm sorry about all the other challenges you and Chris are facing right now. I wish there were some easy solutions I could offer, but I'm afraid that all I can do is say that understand what you're going through, and I hope that you and Chris will find a way to work through the problems.
If there are any specific questions or concerns that we might be able to help you with, just let us know.
Good luck!
Re: New member in Florida
Thank you so much for your kind words, Cheryl!
It is good to have a place to talk about all this!
We just returned from seeing his oncologist. The doctor thinks the back pain could just be nerve irritation from the 2nd back surgery (which was done to remove bone cement which had leaked after the vertebroplasty and was pressing on the spinal cord), but he ordered x-rays to see what's going on and a bone scan to give us his opinion on whether or not Chris can go back to driving.
As to the numbness in his legs, the oncologist said that was most likely a side effect of the Revlimid, so it'll probably be permanent - at least as long as he takes Revlimid. I imagine that such numbness is irritating, but I can't help hoping that Revlimid will keep him in remission for at least 20-30 years (which I know is unrealistic, but, hey, a girl can dream, can't she!?) and he'll just get used to the numbness.
Everything else looks good. Last two M-spikes were zero, protein levels are back to normal and kidneys are working fine. The doctor said he can eat apples and bananas again, which made him happy. The doctor also said he was going to start him on infusions which will strengthen his bones but could weaken his jaws so he needed to go see a dentist and get all necessary work done first - which made me happy because he hasn't seen a dentist in years and I can tell he needs at least a thorough cleaning.
Fortunately, he has fairly good insurance, including dental, and although they give him the runaround on occasion, he didn't have to fight them tooth and nail for every little thing. That alone is a blessing!
Well, I have to get back to work. Again, thank you so much! I'm so glad I found this forum.
Have a wonderful weekend!
It is good to have a place to talk about all this!
We just returned from seeing his oncologist. The doctor thinks the back pain could just be nerve irritation from the 2nd back surgery (which was done to remove bone cement which had leaked after the vertebroplasty and was pressing on the spinal cord), but he ordered x-rays to see what's going on and a bone scan to give us his opinion on whether or not Chris can go back to driving.
As to the numbness in his legs, the oncologist said that was most likely a side effect of the Revlimid, so it'll probably be permanent - at least as long as he takes Revlimid. I imagine that such numbness is irritating, but I can't help hoping that Revlimid will keep him in remission for at least 20-30 years (which I know is unrealistic, but, hey, a girl can dream, can't she!?) and he'll just get used to the numbness.
Everything else looks good. Last two M-spikes were zero, protein levels are back to normal and kidneys are working fine. The doctor said he can eat apples and bananas again, which made him happy. The doctor also said he was going to start him on infusions which will strengthen his bones but could weaken his jaws so he needed to go see a dentist and get all necessary work done first - which made me happy because he hasn't seen a dentist in years and I can tell he needs at least a thorough cleaning.
Fortunately, he has fairly good insurance, including dental, and although they give him the runaround on occasion, he didn't have to fight them tooth and nail for every little thing. That alone is a blessing!
Well, I have to get back to work. Again, thank you so much! I'm so glad I found this forum.
Have a wonderful weekend!
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Nico1908 - Name: Nico1908
- Who do you know with myeloma?: My boyfriend
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 47
Re: New member in Florida
Nico-
Where are you located? Did your boyfriend get infusions of Velcade or subQ injections? If he got infusions of Velcade, he is likely experiencing peripheral neuropathy (PN) from that. If he got injections he could also develop the PN from those, but it is less common. Revlimid doesn't usually cause PN, but it is possible. If he does have some irritation of the spinal cord this could also be causing the PN. It's good that the oncologist is looking into this complaint more.
Although ONJ, osteonecrosis of the jaw, is a concern with Zometa and with Aredia -- bisphosphonates for the bones -- it is a low percentage of people who develop it. Good for the oncologist insisting that your boyfriend see a dentist prior to starting the infusions. It's also important for regular dental care with myeloma because of risk of infections, etc.
As far as your financial concerns, have your husband talk with the long-term disability company to get a better picture of what he will be receiving monthly and what benefits he will still have. He can also apply for financial assistance from the Chronic Disease Fund for assistance paying for treatment related medications, Revlimid. The Leukemia and Lymphoma Society has funds up to $10,000 a year for help with medical insurance costs, drug costs, co-pays and co-insurances. Both of these funds have fairly generous annual income limits to qualify. Their are other funding agencies that provide grants, too. Talk with the social worker at the cancer center where your boyfriend is being treated.
If you have a support group anywhere near you, I would suggest that you go to talk with other caregivers. You could also look for caregiver support groups in your area. They are a real help when you are beginning to feel overwhelmed with all of the stuff that goes along with living with someone who has myeloma. Again, ask the social worker for suggestions.
The best to you and your boyfriend in this journey. Make sure that you take care of yourself and pamper yourself, too.
Nancy in Phila
Where are you located? Did your boyfriend get infusions of Velcade or subQ injections? If he got infusions of Velcade, he is likely experiencing peripheral neuropathy (PN) from that. If he got injections he could also develop the PN from those, but it is less common. Revlimid doesn't usually cause PN, but it is possible. If he does have some irritation of the spinal cord this could also be causing the PN. It's good that the oncologist is looking into this complaint more.
Although ONJ, osteonecrosis of the jaw, is a concern with Zometa and with Aredia -- bisphosphonates for the bones -- it is a low percentage of people who develop it. Good for the oncologist insisting that your boyfriend see a dentist prior to starting the infusions. It's also important for regular dental care with myeloma because of risk of infections, etc.
As far as your financial concerns, have your husband talk with the long-term disability company to get a better picture of what he will be receiving monthly and what benefits he will still have. He can also apply for financial assistance from the Chronic Disease Fund for assistance paying for treatment related medications, Revlimid. The Leukemia and Lymphoma Society has funds up to $10,000 a year for help with medical insurance costs, drug costs, co-pays and co-insurances. Both of these funds have fairly generous annual income limits to qualify. Their are other funding agencies that provide grants, too. Talk with the social worker at the cancer center where your boyfriend is being treated.
If you have a support group anywhere near you, I would suggest that you go to talk with other caregivers. You could also look for caregiver support groups in your area. They are a real help when you are beginning to feel overwhelmed with all of the stuff that goes along with living with someone who has myeloma. Again, ask the social worker for suggestions.
The best to you and your boyfriend in this journey. Make sure that you take care of yourself and pamper yourself, too.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: New member in Florida
Hi Nancy,
Thank you so much for your reply!
Chris had Velcade infusions. I'm hoping the numbness and weakness in his legs will resolve itself and that his back pain isn't caused by another fracture.
He talked to the long-term disability insurance carrier last week, and while he'll have much less money than before, it will be enough to pay his share of the bills. At his point, he doubts that he'll be able to go back to driving for a living, but a lot depends on how things will go with his back and legs.
Thank you for the tip about the Leukemia & Lymphoma Society! I don't know if his oncology center has a social worker on staff, but I'll start researching potential financial support.
We're in the Florida Panhandle and the nearest support group is a 45 minutes drive away. There are no local myeloma groups; I found a leukemia/lymphoma group, but they're meeting at noon or early in the afternoon and I work full-time, so I can't go. That's why I'm so grateful for this forum.
Have a great week!
Thank you so much for your reply!
Chris had Velcade infusions. I'm hoping the numbness and weakness in his legs will resolve itself and that his back pain isn't caused by another fracture.
He talked to the long-term disability insurance carrier last week, and while he'll have much less money than before, it will be enough to pay his share of the bills. At his point, he doubts that he'll be able to go back to driving for a living, but a lot depends on how things will go with his back and legs.
Thank you for the tip about the Leukemia & Lymphoma Society! I don't know if his oncology center has a social worker on staff, but I'll start researching potential financial support.
We're in the Florida Panhandle and the nearest support group is a 45 minutes drive away. There are no local myeloma groups; I found a leukemia/lymphoma group, but they're meeting at noon or early in the afternoon and I work full-time, so I can't go. That's why I'm so grateful for this forum.
Have a great week!
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Nico1908 - Name: Nico1908
- Who do you know with myeloma?: My boyfriend
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 47
Re: New member in Florida
I am also in the Florida panhandle and I attend the multiple myeloma support group in Panama City. My husband and I drive about 1 hour 15 minutes to attend the once-a-month meeting, and it is well worth it. I can send you contact information for the group leader if you are interested.
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elizabethmwm - Name: Elizabeth M
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 8/20/2012
- Age at diagnosis: 57
Re: New member in Florida
Thank you so much, Elizabeth! Yes, I'd like to have the contact information for the Panama City group. Do they have a website?
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Nico1908 - Name: Nico1908
- Who do you know with myeloma?: My boyfriend
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 47
Re: New member in Florida
Nico, I am sorry to hear your sad story, but there is help and advice available to you and your boyfriend. Joining and attending support grout meetings was an incredible help to me, and I highly suggest you seek out your local group and attend.
Myeloma is a difficult, complicated, and expensive disease. Please seek out all the help you can muster up, and learn as much as you can about the disease. My heart goes out to you and your boyfriend. He is a very lucky man to have someone as caring as you.
Best of luck to both of you on this journey.
Myeloma is a difficult, complicated, and expensive disease. Please seek out all the help you can muster up, and learn as much as you can about the disease. My heart goes out to you and your boyfriend. He is a very lucky man to have someone as caring as you.
Best of luck to both of you on this journey.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: New member in Florida
Thank you, Dano! I see you're a fairly newly diagnosed multiple myeloma patient yourself. Good luck to you too!
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Nico1908 - Name: Nico1908
- Who do you know with myeloma?: My boyfriend
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 47
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