[BarbTonn]

member introductions/personal stories

by BarbTonn on Thu Jan 06, 2011 3:57 pm

My husband, Tom, was diagnosed with multiple myeloma last April, 2010. He was given 10 sessions of radiation for one lesion on his spine to quickly shrink it before it affected any vital organs. The radiation severely burned his esophagus making it extremely painful to swallow anything solid or liquid. Tom ended up in the hospital for 4 days so he could be given fluids and pain meds by IV until his esophagus started to heal and he was able to eat and drink again.

They also started him on Revlimid/decadron which became ineffective after 4 months. Next they tried Velcade/decadron which also became ineffective after 3 months. Last month he started on Doxil/vincristine/decadron by IV once a month. His blood counts are low 5-15 days after treatment but he is tired all the time. He also has some severe pain in his left thigh, where one of his many lesions are. Tomorrow he'll get his 2nd dose of doxil/vincristine/decadron.

We are seeing an oncologist at the Humphrey Cancer Center in Robbinsdale, MN who came highly recommended by a fellow multiple myeloma patient. They are trying to kill most of the cancer cells so Tom can have an ASCT at the University of Minnesota.

Have any of you had trouble with therapies becoming ineffective? Have any of you been on the doxil/vincristine/decatron treatment after other therapies became ineffective?

We are wondering if we should get another opinion from the Mayo Clinic in Rochester, MN.

I'm finding this site extremely helpful!

Thanks to everyone who has shared their stories!

Barb

[BarbTonn]

Re: member introductions/personal stories

by BarbTonn on Fri Jan 07, 2011 4:42 pm

Tom was unable to have his 2nd chemo treatment today because his WBC was 1.7. We'll wait a week and see if he can have it. We did find out that Tom has several chromosomal abnormalities including the chromosome 13 deletion.

We plan to get another opinion from the Mayo Clinic in Rochester, MN.

[valerie]

Re: member introductions/personal stories

by valerie on Sat Jan 08, 2011 12:24 am

Barb - it sounds like a good idea in your case to go to Mayo for a second opinion as there may be some clinical trials your husband would qualify for because from what you are describing his disease seems like it may be more challenging. Would you mind sharing what chromosome abnormalities they found in your husband's case. My husband has several abnormalities as well, the worst of which I believe is the deletion of chromosome 17 and I think his type is IGA lambda. We are kicking around the idea of going to Mayo as well but we are comfortable so far with the treatment he is getting from the local oncologist/hematologist. I would be very interested to hear about your Mayo experience . Stay warm - Sven's forecasting a chilly weekend ahead!

[habubrat]

Re: member introductions/personal stories

by habubrat on Mon Jan 10, 2011 12:25 pm

For those interested, UAMS no longer considers chromosome deletion an indicator of high risk Myeloma, nor have trouble treating patients with that presentation.

[BarbTonn]

Re: member introductions/personal stories

by BarbTonn on Mon Jan 31, 2011 1:15 pm

We got our second opinion from the Mayo Clinic. Not the answers we were hoping for. Cancer count is up M-spike is 5.3 (or close, can't remember exactly). Since 3 different chemos became ineffective, they would like to treat it aggressively (Tom has high rick - due to chromosome abnormalites - aggressive multiple myeloma) with VTD-PACE. The PACE would be given by a 4-day continuous infusion in the hospital so they can closely monitor his blood counts and give him transfusions when necessary. The VTD would be given twice a week as an outpatient. I think the VTD-PACE is the same as the TT3 at the U of Lilttle Rock - right Lori? Once they get the cancer under control, they would like to do an allo (donor) transplant. We will have Tom's 4 siblings all tested and pray that at least one of them is a perfect match. We are not sure if we will have the transplant done at the Mayo Clinic in Rochester (2 hours from where we live) or at the U of Minnesota (1/2 drive from our home). The Mayo Clinic does it as an outpatient and you have to stay in Rochester for a minimum of 100 days with a caregiver. The U of M keeps you in the hospital until your blood counts are high enough to send you home (if you live within 30 miles of the U because you still need to come in for frequent labs).

The Mayo found the source of my husbands severe pain/numbness in his thigh. He has a lesion on his vertabrae that is pressing on a nerve. They plan to shrink the tumor with radiation. They don't believe surgery is necessary. We are hoping to get the radiation started later this week followed by the VTD-PACE chemo.

Have any of you had allo transplants done at either the Mayo or the University of Minnesota? If so, how was your experience?

Thanks and please help us pray for a perfect donor match with Tom's siblings.

Barb

[justme]

Re: member introductions/personal stories

by justme on Mon Jan 31, 2011 7:07 pm

I'm so sorry to read Tom's labs weren't what we were hoping for Barb. I do believe getting that second opinion from Mayo though was crucial though. This illness is relentless and the more we are educated, the easier to make the difficult decisions it encompasses.

I have IGD multiple myeloma; very aggressive in my case. As you heard me say last month at the multiple myeloma meeting; I was in kidney failure at diagnosis and was not expected to make it to transplant. However, I had transplant in '06 and am still in a complete response to transplant.....meaning, it can look pretty ugly and still turn around. Facing reality AND holding onto hope....

I had my auto SCT at Mayo and wish now I would have suggested that you take a tour of the Gift of Life Transplant House while you were down there. I stayed there during my transplant and many times since then. Mayo recommended we stay there and I don't know what we would have done without the House.

Keeping you and your husband on my prayer list as you move forward. Counting my blessings,

Shirley Ann

[BarbTonn]

Re: member introductions/personal stories

by BarbTonn on Tue Feb 01, 2011 12:25 pm

Thanks so much Shirley! We did tour the Gift of Life Transplant house while in Rochester and were very impressed. If we do decide to have the transplant done at the Mayo, we will certainly stay there.

Thanks for the prayers! That's all we can do right now!

Barb