[Jayhawkmom]

Wife of Multiple Myeloma Patient

by Jayhawkmom on Fri May 31, 2013 2:00 pm

Hello! I was so happy to find this website today! My husband is 47 years old and was diagnosed last month with Stage III Multiple Myeloma. This was a complete shock to us both. We have 4 children at home ages 17, 14, 7 and 7 months. It has been very scary for the whole family. We still don't know what to expect or what to do really. He has had 4 doses of Velcade and started taking the Revlimid last week. He had to be hospitalized the first week after diagnosis for severe pain. That is better under control, however, he is on high doses of narcotics. He didn't have insurance through his employer so we have applied for Medicaid. Hopefully that will get approved soon. We went to KU Med Center in Kansas City a few days ago and they want to do stem cell transplant (I think that is what it is going to be, still kind of confused) in September. That is over an hour away from our home so unsure how we will handle that with the kids yet as the doctor said we would need to be there for 40 days! Any advice would be greatly appreciated as we have no idea what we are heading into here!

[Kate]

Re: Wife of Multiple Myeloma Patient

by Kate on Sat Jun 01, 2013 3:28 pm

Hi Jayhawkmom,
Welcome to the forum. In case Medicaid would not cover all your upcoming cost for medications please know that Celgene (Revlimid) and also the manufacturer of Velcade and I am sure some others have programs where they can and will assist people or let them have the medication for free for a certain period. There are postings about this on this forum .

I don't know how severe your husband's pain were prior to diagnosis and what type of pain required his hospitalization. In my case for instance, I was totally pain free after neck surgery, and some pains/side effects appeared after I started the meds.
I would suggest that you and your husband inform yourself as much as you can and don't jump to a transplant "tomorrow". It seems, lately, that medical experts can't agree on the absolute benefits of SCTP.

BTW, there are a number of members on the forum who have opted not to have SCTP (I am one of them - but just in the beginning stages of treatment. Revlimid and Dex.) If interested, there are some posts regarding this matter on the beacon:

https://myelomabeacon.org/forum/no-sctp-chemo-only-treatment-t1686.html
Wishing the best for your family,
Kate

[LibbyC]

Re: Wife of Multiple Myeloma Patient

by LibbyC on Sun Jun 02, 2013 6:03 am

Hi Krista,
It is four years since my diagnosis so the shock of being told has worn off but I can appreciate where you are at the moment (my children were 6 and 10). I think this website is fantastic and it is a great resource. Ask a question and usually someone answers. One of the things that I think is important to find out is what your husbands Myeloma cytogenetics are (these are the mutations that have caused the myeloma). The doctors usually use a sample from a bone marrow biopsy - he might have already had one. Some of the mutations respond to treatment differently.

The hospital where I had my auto stem cell transplant was ~2 hours drive from home. My husband stayed at home (but he took time off work using sick leave and some holiday leave ~6 weeks) would take the children to school, would then drive down to see me and help shower me etc. then he would drive home to pick the children up from school. It was an exhausting time for him. Other families would help with the childrens after school activities. We live in a relatively small community and help was always at hand. Someone started a food roster and we had an esky at the back door that people would put the food in. It was one less thing that my husband had to worry about.

All the best,
Libby

[Jayhawkmom]

Re: Wife of Multiple Myeloma Patient

by Jayhawkmom on Mon Jun 03, 2013 2:11 pm

Thank you both for your responses. They were very helpful. Unfortunately Brian had to be hospitalized again on Saturday. It isn't for pain this time. He woke up from a nap Saturday with 104.4 fever so we called the oncologist and went to the ER. They started giving him 4 different kinds of antibiotics and admitted him. They got the fever down all day Sunday, but it returned last night. They are going to keep him until at least tomorrow. However, he had Velcade scheduled for tomorrow that they aren't going to do now. They are waiting for the cultures to come back to see what kind of infection it is, but think it may have been from getting his port put in last week.
To answer some of the questions, his pain started in his ribs over a year ago and about 2 months ago got much worse. He had been to the ER a few times before this and they basically blew him off. They kept saying it was probably nerve pain or shingles. I guess they never looked at his blood work or saw any abnormalities and never thought to do a CT scan. When they finally diagnosed him, he had 3 broken ribs and a very large tumor connected to his bottom ribs.
As far as the genetic tests they did from the bone marrow biopsy, the BMT Dr. said it was IGC Lambda (or IGE Lamba, i cannot read my writing, lol).
Unfortunately between the kids, still trying to work and bring in some income for the family, his doctor's appts and now hospitalization, i haven't had time to do as much research as I would like. I feel totally dumb at this point. We have been given tons of information, i just haven't had time to read it yet Hopefully, I will have a chance to do that soon.
I really appreciate both of your responses and hope to do more "talking" with you soon. This site has already been SO helpful to me

Thank you all!

[Ken W Dick]

Re: Wife of Multiple Myeloma Patient

by Ken W Dick on Tue Jun 25, 2013 4:49 pm

I also took me a while to get diagnosed. I had pain in my hip and after several months of getting shots and physical therapys, I finally got a doc who would do an MRI. They found 8 lessions in my hip and one in my shoulder. If I remember correctly Revlimid and Velcade help you out a lot. ALSO, get ahold of LLS. They paid all my co-pays while in treatment. They were awesome. I am three years in TOTAL remission. I did a SCT after treatment. I recomend it myself. It is kind of the knock-out punch in my mind anyway. Try not to get too bogged down with getting info on all this. I know it's very overwhelming. They say it's un-curable, but some would argue that. I hope I am around a long time more. 56 years old now ! Good luck. There is a lot of people on this forumn who can help you sort things out. Keep the faith!

[Jayhawkmom]

Re: Wife of Multiple Myeloma Patient

by Jayhawkmom on Sat Jun 29, 2013 1:01 pm

Thanks so much for your response. I haven't had a chance to post in awhile. The infection ended up being Brian's gall bladder and they removed it. He has been home a few weeks now, but has had to return to the ER a few time because now he has started to pass out and have seizures. Our oncologist is still trying to figure out what it could be. they have lowered his Morphine dose, he wore a heart monitor for 24 hours and may have to have an MRI of his brain next week. The only scary thing is the oncologist said that very rarely the cancer can infiltrate your spinal column and if that is the cause, there is nothing they can do for that. We are praying it is only the medicine. I have had a chance to do more research and do feel more informed now. He was able to finish his 2nd round of chemo last week. Now we just have two more before the stem cell transplant. That is what is scaring us the most right now. It sounds so awful what you have to go through. However, I guess it is worth it in the long run. We still appreciate any advice anyone on her wants to give. Thanks again for the advice so far!