My husband Tony was diagnosed here in Michigan in September of this year with multiple myeloma. As everyone here knows, the news sets forth a whole new way of life.
Tony is 45, remarkably healthy otherwise. He eats very well, works out a few times a week and is a devoted father to our two daughters, ages 11 and 8. He never smoked, drinks very little, and took no medications besides vitamins and aspirin. His work background is electrical engineering, he was never around any environmental agents that have been discussed as to their link to multiple myeloma.
His diagnosis was a result of an annual physical. He had missed his one the year prior. His employer sent him a message stating that if he didn't get a physical by autumn, his insurance rates were going to skyrocket. So he went in August and by September, he sat there with the news of multiple myeloma. His oncologist believes that he had the beginnings of it back in 2009, the lab work and medical records now in retrospect suggest that he already had multiple myeloma then.
It has not felt real until this very week, a few days after Christmas. He is to begin chemo this week, Velcade, Rev and Dec. We put off everything until we could get the second opinion, which we were fortunate to get from MD Anderson in Houston. MD Anderson at first said that the treatment plan needed a full panel discussion with an entire team because my husband is also a carrier for a rare blood disorder called Thalassemia, which complicated the plan of action. His hemoglobin and wbc levels are always different from normal, healthy people. My daughter is also a carrier for Thalassemia, her levels are always off too.
But his hemoglobin number dropped enough last week that MD Anderson called him and said he needed to start the chemo immediately, that there would be no need for the panel to discuss his case now. MD Anderson's diagnosis and treatment plan are identical with our oncologist here in Michigan, so now we feel confident that we are going with the right path. We don't feel that pursuing a third opinion at U of M in Ann Arbor is necessary.
He has the abnormal genetic chromosomes on 11, 13q and 17p that make him high risk apparently. I don't know what his M Spike is, I never remember to ask and I can't seem to locate it in his medical records. His hemoglobin is now 9.9. His marrow is 75% myeloma. His spine is showing some degradation and some osteoporosis there, but otherwise his bones are normal. Personally, I think he is going to win this fight.
We made many changes in our household rather quickly, in attempts to give him the best fighting chance. One, we converted the home and diet as much as possible to all organic, including even dishwashing detergent and such. Very little meat, lots of salmon, lots of fresh vegetable juice squeezed at home, no sugar and only whole grain items. Second, I am insistent that he get out nearly every day for some exercise, be it a jog, a swim or a vigorous walk with our big dog. He needs that bit of sunshine. And third, we have renewed our faith in each other, our God, our family and friends.
He is also taking curcumin, based on MD Anderson's suggestion. He is taking 12 grams a day. He drinks lot of green tea until Friday, then apparently he needs to stop. And he is drinking a lot of water, trying to stay completely hydrated. He dabbled with apricot kernels, but that just wasn't going to work.
We are doing everything we can to keep positive. Whenever I read something exciting, I tell him. I stay up late most nights reading as much as I can. I don't feel I am completely prepared to fight this battle starting in a few days, but I am doing my best.
This Beacon site has proved to be an extremely valuable source of information, I feel fortunate to have found it. I started reading the posts and the forums and the blogs a couple of months ago, but obviously have not introduced myself or Tony until now.
There has been so much information coming at us, it is hard to make heads or tails of some of it. Right now I am just focusing on keeping my attitude positive, let my husband talk and express himself, take care of him and our daughters. We are just entering into this battle, hopefully I have the strength to keep it all together!
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6 posts
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Jenn - Name: Jenn
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 45
Re: My husband Tony has multiple myeloma, begins chemo this
Hi Jenn,
All the best to you and Tony. Make sure Tony stays active. I know that being active has helped me through this ordeal. I have the 11 deletion and around the same marrow envolment as Tony. I was dx'ed last Oct. and this is day 48 after sct. I started chemo with Velcade and dex, then Velcade, doxil, dex. and finally Velcade, rev, and dex. The rev was the one that knocked the counts down enough that I could get the sct. You and Tony hang in there and stay strong mentally and physically.
ritz
All the best to you and Tony. Make sure Tony stays active. I know that being active has helped me through this ordeal. I have the 11 deletion and around the same marrow envolment as Tony. I was dx'ed last Oct. and this is day 48 after sct. I started chemo with Velcade and dex, then Velcade, doxil, dex. and finally Velcade, rev, and dex. The rev was the one that knocked the counts down enough that I could get the sct. You and Tony hang in there and stay strong mentally and physically.
ritz
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Ritz - Name: Ritz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Oct 2010
- Age at diagnosis: 62
Re: My husband Tony has multiple myeloma, begins chemo this
Hello!
Sorry to hear about your husband. I am very similar as I was otherwise healthy and took good care of myself. I was DXd at 43 (this year) with 80% cancer in marrow and 8.9 M Spike. I was in the hospital with a 6.3 HGB. I am now at 2% and 0.1 M Spike.
I have posted a lot of information on what I have done, and am doing, to fight and have attained great results so far.
Check out my thread, let me know if you or your husband have any questions I may be able to help with.
https://myelomabeacon.org/forum/newly-diagnosed-43yr-old-with-8-9-m-spike-t669.html
-Chris
Sorry to hear about your husband. I am very similar as I was otherwise healthy and took good care of myself. I was DXd at 43 (this year) with 80% cancer in marrow and 8.9 M Spike. I was in the hospital with a 6.3 HGB. I am now at 2% and 0.1 M Spike.
I have posted a lot of information on what I have done, and am doing, to fight and have attained great results so far.
Check out my thread, let me know if you or your husband have any questions I may be able to help with.
https://myelomabeacon.org/forum/newly-diagnosed-43yr-old-with-8-9-m-spike-t669.html
-Chris
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: My husband Tony has multiple myeloma, begins chemo this
HI Jenn,
I know how this can all be totally overwhelming at first, as there are just so many decisions to be made and initially we have little information to feel competent enough to do so, not to mention the emotional roller coaster that makes the decision making that much more difficult.
One of the best ways though to manage that is to go where you can find the best expertise, which you have done. You can feel confident that you made a good choice where there are exceptional clinicians who manage multiple myeloma and know the most cutting edge research and therapeutic options. That puts you on solid footing...sorta like being accepted to Yale, Harvard or Michigan ...now all you gotta do is study hard and graduate...o yeah..pay for it too....just like the therapy.
I found it interesting that MD Anderson recommends 12gms of curcumin daily..did you find a good source and price for that?..or is it prescription (due to strength) and your insurance covers it?
Also, according to Dr Rajkumar (ASH2010&2011) serum free light chain assay appears to be the new
gold standard test to follow moreso than M spike. You may want to look for that. On my test results it is listed as Immunoglobulin Free Light Chains (S)...s is for serum. The FLC, has the additional benefit of demonstrating whether the therapy is selectively knocking out the tumor cells, i.e. those cancerous monoclonal immunoglobulins which are being overproduced.
It is really clear from the new clinical trials and ASH 2011 that we are headed rapidly towards multiple myeloma being a 'chronic' manageable disease for over 80% of newly diagnosed patients. This was also clear from the Barlogie/Rajkumar debate the Beacon Staff posted. And even for those in the high risk 15% or ultra high risk 5% there are new drugs on the horizon.
With faith and prayer,Tony will be here to walk both his beautiful girls down the aisle, and dance with his lovely bride as you celebrate your 50th anniversary!
I wish you and Tony all the best, and know that with the new agents that are out there you are going to have an exceptional opportunity to be victorious when it comes to managing this disease.
Blessings to you and your family,
suzierose
I know how this can all be totally overwhelming at first, as there are just so many decisions to be made and initially we have little information to feel competent enough to do so, not to mention the emotional roller coaster that makes the decision making that much more difficult.
One of the best ways though to manage that is to go where you can find the best expertise, which you have done. You can feel confident that you made a good choice where there are exceptional clinicians who manage multiple myeloma and know the most cutting edge research and therapeutic options. That puts you on solid footing...sorta like being accepted to Yale, Harvard or Michigan
...now all you gotta do is study hard and graduate...o yeah..pay for it too....just like the therapy. I found it interesting that MD Anderson recommends 12gms of curcumin daily..did you find a good source and price for that?..or is it prescription (due to strength) and your insurance covers it?
Also, according to Dr Rajkumar (ASH2010&2011) serum free light chain assay appears to be the new
gold standard test to follow moreso than M spike. You may want to look for that. On my test results it is listed as Immunoglobulin Free Light Chains (S)...s is for serum. The FLC, has the additional benefit of demonstrating whether the therapy is selectively knocking out the tumor cells, i.e. those cancerous monoclonal immunoglobulins which are being overproduced.
It is really clear from the new clinical trials and ASH 2011 that we are headed rapidly towards multiple myeloma being a 'chronic' manageable disease for over 80% of newly diagnosed patients. This was also clear from the Barlogie/Rajkumar debate the Beacon Staff posted. And even for those in the high risk 15% or ultra high risk 5% there are new drugs on the horizon.
With faith and prayer,Tony will be here to walk both his beautiful girls down the aisle, and dance with his lovely bride as you celebrate your 50th anniversary!
I wish you and Tony all the best, and know that with the new agents that are out there you are going to have an exceptional opportunity to be victorious when it comes to managing this disease.
Blessings to you and your family,
suzierose
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: My husband Tony has multiple myeloma, begins chemo this
Our stories are so similar. We also live in Michigan and have 2 children at home. My husband (55) was healthy and health concious. His multiple myeloma was discovered on some routine labs last April. He also has the deletions of 13, and 17p53.
He began RVD in June. Most of the time it did not bother him. He missed 2 days of work over the summer from feeling too lousy from the chemo.
In October he underwent a stem cell transplant at Mayo. It was by no means easy, but he is feeling very well now. He will go back on RVD in 2 weeks - at about 1/2 the dose and frequency than before the transplant.
I'm writing to reassure you that life will get good again. When Tom was first diagnosed we were in such shock. All I could think was that he was going to die, and that the time between now and then would just be day after day of never-ending depression: then I found the Myeloma Beacon. I learned so much by reading it daily. I have gained hope by seeing people write in here who have had multiple myeloma for years. As the initial shock wore off, and a treatment plan was in place, little by little normalcy and happiness started creeping back into our lives. We know that his life probably will be shortened by this disease, but we hold out hope that it can be kept at bay for many years. We hold out hope that many of the drugs in trials now will hold out even better odds for the future.
I wish you and your husband well.
He began RVD in June. Most of the time it did not bother him. He missed 2 days of work over the summer from feeling too lousy from the chemo.
In October he underwent a stem cell transplant at Mayo. It was by no means easy, but he is feeling very well now. He will go back on RVD in 2 weeks - at about 1/2 the dose and frequency than before the transplant.
I'm writing to reassure you that life will get good again. When Tom was first diagnosed we were in such shock. All I could think was that he was going to die, and that the time between now and then would just be day after day of never-ending depression: then I found the Myeloma Beacon. I learned so much by reading it daily. I have gained hope by seeing people write in here who have had multiple myeloma for years. As the initial shock wore off, and a treatment plan was in place, little by little normalcy and happiness started creeping back into our lives. We know that his life probably will be shortened by this disease, but we hold out hope that it can be kept at bay for many years. We hold out hope that many of the drugs in trials now will hold out even better odds for the future.
I wish you and your husband well.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: My husband Tony has multiple myeloma, begins chemo this
Thank you all for your kind words and support. It has helped so much reading everyone's postings and information. It is of great comfort and provides so much information!
Regarding the curcumin, MD Anderson did recommend the 12 g a day, but we buy it online. We found 1000 mg pills with the pepper. My husband takes three at a time spaced throughout the day. It is not covered by insurance, of course!
A bit more info, his M spike is 2.8 and he is IgG kappa. I still have not quite grasped what all the vocab and numbers mean, but have been reading well into the nights learning about multiple myeloma. I've learned so much reading here on the Beacon.
We met a fifteen-year multiple myeloma survivor on Sunday, what a boost to our morale! My children were amazed and it made them pretty happy.
Regarding the curcumin, MD Anderson did recommend the 12 g a day, but we buy it online. We found 1000 mg pills with the pepper. My husband takes three at a time spaced throughout the day. It is not covered by insurance, of course!
A bit more info, his M spike is 2.8 and he is IgG kappa. I still have not quite grasped what all the vocab and numbers mean, but have been reading well into the nights learning about multiple myeloma. I've learned so much reading here on the Beacon.
We met a fifteen-year multiple myeloma survivor on Sunday, what a boost to our morale! My children were amazed and it made them pretty happy.
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Jenn - Name: Jenn
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 45
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