Thanks Cheryl G. You words were so kind. And thank you for your support.
dogmom, I've been reading your posts/comments since I got on here since your story was so similar to mine. Thank you for all the information you have provided. I have read your transplant thread and am praying for the best. It seems your hubby is on an upward swing and hopefully he will continue to do so and you guys get to go home soon. Thanks for all the updates.
Forums
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TCG - Name: Tara
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 43
Re: Newly diagnosed - first treatment today
Hi,
Sorry for your husbands diagnosis
Pretty young in myeloma terms. I am 38 now, was 32 when diagnosed, so a freak in myeloma terms! lol. I initially did Velcade and high-dose dex followed by stem cell transplant, and it's been 6 years. Unfortunately my protein has started to go up and I'm going to be starting treatment for a relapse. I'm going to do the same treatment as your husband.
Velcade the first time around really worked well for me and not too many side effects. This time around they are adding the Cytoxan in and I will have another transplant.
I'm in Canada, so my options were a Velcade-based regimen, or Revlimid + dex, but not Velcade and dex at the same time (not funded that way)
Sorry for your husbands diagnosis
Pretty young in myeloma terms. I am 38 now, was 32 when diagnosed, so a freak in myeloma terms! lol. I initially did Velcade and high-dose dex followed by stem cell transplant, and it's been 6 years. Unfortunately my protein has started to go up and I'm going to be starting treatment for a relapse. I'm going to do the same treatment as your husband. Velcade the first time around really worked well for me and not too many side effects. This time around they are adding the Cytoxan in and I will have another transplant.
I'm in Canada, so my options were a Velcade-based regimen, or Revlimid + dex, but not Velcade and dex at the same time (not funded that way)
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Newly diagnosed - first treatment today
Off-topic, but just a slight clarification, Velcade (bortezomib) and dex are given together (with cyclophosphamide) in Canada very regularly. As Velcade is given in hospital via injection, federal law requires the government to pay for it. Cyclophosphamide and dexamethasone are prescription pills which your employer's insurance covers if you work; if you don't have work and are on provincial disability, the provincial disability program picks up the bill. If you are on federal disability (because your have too many financial resources to qualify for provincial disability), most provinces have a free-of-charge high drug cost insurance which kicks in for the cost of pills like dex and cyclophosphamide after a deductible based on your resources; I believe some provinces like Alberta go even further and cover the costs of dexamethasone and cyclophosphamide without a deductible under their cancer benefit programs.
The reason for this post is that I don't want a fellow Canadian, newly diagnosed, to think they are all alone when comes to covering the costs of any portion of their treatment dispensed in pill form.
The reason for this post is that I don't want a fellow Canadian, newly diagnosed, to think they are all alone when comes to covering the costs of any portion of their treatment dispensed in pill form.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Newly diagnosed - first treatment today
My husband was diagnosed a year ago March. Treatment did not start until early February 2016. His initial treatment of Revlimid, dex and Velcade ended up with him in the hospital with a raging infection. After that, the doctor lowered the dosage. He has one more cycle but as of right now he has no detectable M-spike and all the other numbers look really good.
The reason I am writing is to try to encourage those early in this journey. I read everything I could find on this disease and its treatments. The side effects of the chemo worried me to death, but after our initial scare, everything leveled out. The only side effect my husband has is some fluid retention in his feet. In the beginning he was a little tired, but now his energy has returned to that of a normal 74 year old man.
Just wanted to say that all those scary side effects may never happen, so try not to worry about what's not happened yet and live each day to the fullest that you can.
The reason I am writing is to try to encourage those early in this journey. I read everything I could find on this disease and its treatments. The side effects of the chemo worried me to death, but after our initial scare, everything leveled out. The only side effect my husband has is some fluid retention in his feet. In the beginning he was a little tired, but now his energy has returned to that of a normal 74 year old man.
Just wanted to say that all those scary side effects may never happen, so try not to worry about what's not happened yet and live each day to the fullest that you can.
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Anonymous
Re: Newly diagnosed - first treatment today
Update: My husband just finished his first full cycle on CyBorD. He's on his first "rest week".
He's had minor symptoms from the chemo so far (thank God). He had constipation really bad that first week, but we are pretty sure it's the pain pills he's been taking for the chest/back pain. He's on a regimen of stool softeners to help combat that, and he only takes the pain meds when he's really hurting. His chest pain has improved, but now he has a little back pain. He says the bone pain seems to move around (originally chest, then his side, now his back).
That first week he also had a mild case of the hiccups. The Velcade shot gave him a rash, but it didn't bother him because he didn't even notice it. I did. He also got a power port put in yesterday because he was tired of being stuck and finding his veins had not become impossible, but it was getting harder.
His kidney function was / is severely compromised, so he's been getting daily IV fluids. The chemo has helped with his creatinine levels, so he's only getting fluids 3-4 times a week now. (We are just so thankful that they did their best to keep him off dialysis while the chemo had a chance to start working. Most people would have been on dialysis at his creatinine levels.)
He went to work today for the first time in a month and I think I was more anxious than he was, but he did well. We have three more cycles to go and then we meet with the specialist about a stem cell transplant.
Please continue to pray for us and thanks to everyone for their kind words, encouragement and advice. I will continue to keep you updated on his progress.
He's had minor symptoms from the chemo so far (thank God). He had constipation really bad that first week, but we are pretty sure it's the pain pills he's been taking for the chest/back pain. He's on a regimen of stool softeners to help combat that, and he only takes the pain meds when he's really hurting. His chest pain has improved, but now he has a little back pain. He says the bone pain seems to move around (originally chest, then his side, now his back).
That first week he also had a mild case of the hiccups. The Velcade shot gave him a rash, but it didn't bother him because he didn't even notice it. I did. He also got a power port put in yesterday because he was tired of being stuck and finding his veins had not become impossible, but it was getting harder.
His kidney function was / is severely compromised, so he's been getting daily IV fluids. The chemo has helped with his creatinine levels, so he's only getting fluids 3-4 times a week now. (We are just so thankful that they did their best to keep him off dialysis while the chemo had a chance to start working. Most people would have been on dialysis at his creatinine levels.)
He went to work today for the first time in a month and I think I was more anxious than he was, but he did well. We have three more cycles to go and then we meet with the specialist about a stem cell transplant.
Please continue to pray for us and thanks to everyone for their kind words, encouragement and advice. I will continue to keep you updated on his progress.
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TCG - Name: Tara
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 43
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