I was diagnosed with multiple myeloma (IgA kappa with translocation t(4;14)) in June of 2016 after a bone marrow biopsy had shown that my bone marrow had 50 percent of its cellular content being malignant plasma cells. The normal plasma cell content in a healthy bone marrow is 1 to 3 percent. Due to my relatively high concentration of malignant plasma cells, I was advised to start treatment for the multiple myeloma right away. I have now completed 6 rounds of induction therapy using the CyBorD regimen (cyclophosphamide, bortezomib, and dexamethasone). Each round lasted 5 weeks with the fifth week having just the cyclophosphamide component of the regimen.
The results of my induction therapy have been very good, with my M-protein (M-spike, paraprotein) decreasing to the point where it is no longer measurable with routine electrophoresis. It had started out at 40 g/L (4 g/dL). I am sure my M-protein is not zero, just lost in the noise of the measurement technique. I gather this often happens with IgA myelomas.
I’ve been doubly fortunate because my myeloma treatment has also resulted in a substantial improvement in my battle with anemia. My anemia itself was primarily due to two long standing lymphoproliferative disorders (hairy cell leukaemia and a T-cell leukaemia) that have dogged me for years. Apparently, the cyclophosphamide component of my treatment has knocked down the size of my cancer burden from my two lymphoproliferative disorders. With transfusions I am now able to keep my hemoglobin level above 90 g/L (9 g/dL). I feel energized. Yeah!
My hematologist has been advising me all along that I could stop my induction treatments before the full nine cycles of CyBorD were completed and try for an autologous stem cell transplant. I would have to first go through a battery of tests to make sure I am fit enough for the procedure. I was also told that my age is somewhat of a negative factor.
In my customary fashion, I investigated my transplant option, trying to figure out whether I should go for it or not. In the end I decided that I should I go ahead with the procedure, as I think it will extend my life and make an improvement in my quality of life. I realize there are significant risks with the procedure, but I deem them to be reasonable in view of my circumstances. After a successful transplant I will be put on maintenance therapy. A quick return to some kind of treatment is indicated because my myeloma has the t(4;14) translocation.
My transplant will be done at the Vancouver General Hospital in British Columbia, Canada. I will be treated on an outpatient basis. My own home is where I will spend my free time. I have a friend who is willing to act as my primary caregiver and we are busy coordinating ourselves in preparation for the transplant. My transplant is scheduled for March 9, 2017.
Pre transplant I am going to have my lungs checked out, see the BC Cancer dentist, have my chest x-rayed, have an electrocardiogram, spend 24 hours peeing into a container, have many blood tests and lastly, have a MUGA scan (a test to see how well my heart pumps blood). If this all works out, I will have my stems cells harvested on the 21st and 22nd of February. The Hickman line goes in on March 6th with ablative chemotherapy (melphalan) following on March 8th. The next day, March 9, I have my stem cells returned to me. It is the day I am rescued, so to speak.
As time goes by, I will add to my posts and try to write things that may be helpful for those contemplating having stem cell transplants. There are already a fair number of people who have written about their experiences with stem cell transplants. (Many thanks to them.) They have been informative for me and likewise I hope I have something positive to offer.
Let me know if there are any specific items you want me to include.
Joe
Forums
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Stemming the tide: Wobbles & his transplant
That's a great introduction to your transplant thread, Joe. Thanks!
You've certainly been through a lot already. It's great that the treatment you've received so far has helped with the leukemia that you're also battling. Do your doctors think the high-dose melphalan during the transplant process could have a similar effect?
Good luck!
You've certainly been through a lot already. It's great that the treatment you've received so far has helped with the leukemia that you're also battling. Do your doctors think the high-dose melphalan during the transplant process could have a similar effect?
Good luck!
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JimNY
Re: Stemming the tide: Wobbles & his transplant
Thanks Joe. I agree with JimNY, your post is great. I am also contemplating an autologous transplant at Vancouver General Hospital (VGH). I have a consultation scheduled for March 6, 2017. Your post already provides extremely useful information that I need to query my transplant specialist and lead oncologist about.
I look forward to reading any updates you are able to provide and hope all goes fantastic for you during this procedure. I read some of your comments leading up to the decision and appreciate the analysis.
Like you, I am undergoing a CyBorD regimen (cyclophosphamide, bortezomib, and dexamethasone) in my induction therapy and my monoclonal protein level has decreased significantly at least so far over the first 2 cycles. I was pleased to read your reference to an outpatient option at VGH for the transplant. My wife and I reside in Qualicum Beach on Vancouver Island but have an opportunity to stay at a condo close to Vancouver. Unfortunately, this condo is in Richmond on the outskirts, and although close to rapid transit, it may not be an advisable mode of transit for a patient with a suppressed immune system, but I'll weigh this in my decision making for the inpatient / outpatient option should I proceed with the transplant.
Thanks again for your helpful thread.
Sincerely, Colin
I look forward to reading any updates you are able to provide and hope all goes fantastic for you during this procedure. I read some of your comments leading up to the decision and appreciate the analysis.
Like you, I am undergoing a CyBorD regimen (cyclophosphamide, bortezomib, and dexamethasone) in my induction therapy and my monoclonal protein level has decreased significantly at least so far over the first 2 cycles. I was pleased to read your reference to an outpatient option at VGH for the transplant. My wife and I reside in Qualicum Beach on Vancouver Island but have an opportunity to stay at a condo close to Vancouver. Unfortunately, this condo is in Richmond on the outskirts, and although close to rapid transit, it may not be an advisable mode of transit for a patient with a suppressed immune system, but I'll weigh this in my decision making for the inpatient / outpatient option should I proceed with the transplant.
Thanks again for your helpful thread.
Sincerely, Colin
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Colin - Name: Colin Rice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 60
Re: Stemming the tide: Wobbles & his transplant
Jim - Thanks for the positive comments. And yes, the hematologist in charge of my transplant has told me that the melphalan should suppress my lymphoproliferative disorders. This was one of the factors that helped me decide to go ahead with a stem cell transplant.
Colin - Thanks to you for your positive comments as well. For your information, I was advised not to use public transport until I get the okay from the bone marrow transplant team. However, I can tell you that there is extensive help from volunteer drivers who will be able to provide transport from Richmond to VGH free of charge. The bone marrow team will give you all the details. Congrats to you on your M-protein reductions.
Today I did a lot of the preliminary testing for my upcoming transplant (dental visit, chest x-ray, ECG, and ten vials of blood tests). Once that was all done I went for my aphaeresis consultation. I met one of the aphaeresis nurses who explained the procedure. She put me at ease and gave a good description of how my aphaeresis day would proceed. I also got a tour of the ward where the outpatients receive their treatments. It’s not a room at the Hilton, but at least it was a room with a view. I also noticed how easily the rooms can be kept clean. Much thought went into designing them.
After my veins passed inspection, I was given a prescription for G-CSF (Neupogen), which is the drug used to stimulate stem cell production and to get the stem cells to move out of the marrow and into the peripheral blood system. I was told that due to the severely hypo-cellular nature of my bone marrow that it is a “sure bet” that my aphaeresis will take 2 days, not one. I was also given a prescription for Tylenol #3 (acetaminophen / paracetamol + codeine) in case I suffer bone pain as a side effect to the G-CSF injections.
My next stop was going to be at a pharmacy, but another snowstorm struck and I decided it was better to get my medications another day. Enough was accomplished to call it a very successful day. I feel content.
Joe
Colin - Thanks to you for your positive comments as well. For your information, I was advised not to use public transport until I get the okay from the bone marrow transplant team. However, I can tell you that there is extensive help from volunteer drivers who will be able to provide transport from Richmond to VGH free of charge. The bone marrow team will give you all the details. Congrats to you on your M-protein reductions.
Today I did a lot of the preliminary testing for my upcoming transplant (dental visit, chest x-ray, ECG, and ten vials of blood tests). Once that was all done I went for my aphaeresis consultation. I met one of the aphaeresis nurses who explained the procedure. She put me at ease and gave a good description of how my aphaeresis day would proceed. I also got a tour of the ward where the outpatients receive their treatments. It’s not a room at the Hilton, but at least it was a room with a view. I also noticed how easily the rooms can be kept clean. Much thought went into designing them.
After my veins passed inspection, I was given a prescription for G-CSF (Neupogen), which is the drug used to stimulate stem cell production and to get the stem cells to move out of the marrow and into the peripheral blood system. I was told that due to the severely hypo-cellular nature of my bone marrow that it is a “sure bet” that my aphaeresis will take 2 days, not one. I was also given a prescription for Tylenol #3 (acetaminophen / paracetamol + codeine) in case I suffer bone pain as a side effect to the G-CSF injections.
My next stop was going to be at a pharmacy, but another snowstorm struck and I decided it was better to get my medications another day. Enough was accomplished to call it a very successful day. I feel content.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Stemming the tide: Wobbles & his transplant
Few things I learned along the way to transplant:
I had some control over the pain due to GCSF (Neupogen). When my hips hurt and I couldn't straighten up to walk, simply laying down helped relieve pain. When my sternum hurt and I considered whether I was having a heart attack, a heating pad helped. Heat also helped when my face and skull hurt. Point is: I had some control. Also, pain crested and then abated on its own in a few hours (self-resolving). Some take Claritin (loratadine) 10 mg / day in an attempt to avoid pain during GCSF. There is some anecdotal evidence that this may help. I took it, but of course don't know if it helped because don't know how bad pain would have been without it.
I am sure you have heard about holding ice in your mouth before, during, and after the melphalan infusion to avoid mouth sores. Did that as well and did not get any sores.
The advise they give you to ready your home and avoid infection can drive you crazy. I found it much easier to simply think about keeping microbial load low (like on doorknobs) rather than trying to 'sterilize home,' which of course is impossible.
Everyone is different, but, except for rides to appointments, I took care of myself once I was discharged (I had inpatient transplant.).
Please ask your doctor before taking anyone's advise. Good luck to you.
I had some control over the pain due to GCSF (Neupogen). When my hips hurt and I couldn't straighten up to walk, simply laying down helped relieve pain. When my sternum hurt and I considered whether I was having a heart attack, a heating pad helped. Heat also helped when my face and skull hurt. Point is: I had some control. Also, pain crested and then abated on its own in a few hours (self-resolving). Some take Claritin (loratadine) 10 mg / day in an attempt to avoid pain during GCSF. There is some anecdotal evidence that this may help. I took it, but of course don't know if it helped because don't know how bad pain would have been without it.
I am sure you have heard about holding ice in your mouth before, during, and after the melphalan infusion to avoid mouth sores. Did that as well and did not get any sores.
The advise they give you to ready your home and avoid infection can drive you crazy. I found it much easier to simply think about keeping microbial load low (like on doorknobs) rather than trying to 'sterilize home,' which of course is impossible.
Everyone is different, but, except for rides to appointments, I took care of myself once I was discharged (I had inpatient transplant.).
Please ask your doctor before taking anyone's advise. Good luck to you.
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OD22
Re: Stemming the tide: Wobbles & his transplant
Good luck to you! I too will be following your journey. Thank you for sharing. Will be praying and pulling for an uneventful transplant and remission.
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Stemming the tide: Wobbles & his transplant
It’s been more than a week since I’ve lasted posted, but that does not mean that I’ve not been busy. Last week I finished the last of my pre-transplant tests, which was something called MUGA. This was a test to see how well my heart pumps blood. The test consisted of injecting me with a radioactive substance (Technetium 99m) and then using an x-ray detector to measure the quantity of radiation being given off by the blood interior to my heart. Since the technician had also attached electrical leads to me, the x-ray detector was able to synchronize its measurements with my heart beat. From there it is an easy matter to detect the outflow from my heart.
Besides attending to all the medical tests, I’ve also been trying to get a head start on all those personal tasks I need to accomplish in March, things like the filling out of yearly tax forms, car and apartment insurance renewals, etc. My other major task has been to make sure my apartment is reasonably clean and that my caregiver (Josephine) will be happy with her accommodations. She gets a room with a good view of the gardens.
I’ve also been focusing on what sort of physical activities I need to do during my recovery. Fortunately, I know a retired physiotherapist who has been able to design an exercise regimen that will help my muscle tone. I also hope to be able to walk everyday while I am recovering from transplant. Daily walking is something I have been doing for years and I hope to continue with this activity even if I only can go for small walks.
Tomorrow I go to my bone marrow transplant facility for my first injection of GCSF (Neupogen). My caregiver will be supervised for first injection and I will be watched to make sure that I do not have an immediate allergic reaction. I am told that it would be rare to have one. The bigger worry is that my bone marrow does not respond well enough to make a sufficient quantity of stem cells for next week’s aphaeresis. I will not worry about that because that’s in the hands of the Fates.
Now that I am only three weeks away from my transplant I am beginning to realize that my transplant is actually going to happen. In one way this has been a good thing for me because I am becoming more focused on what I need to do. But I also find myself feeling more anxious. It is a bit like having a big date in a few days and wondering how it will all turn out.
Joe
Besides attending to all the medical tests, I’ve also been trying to get a head start on all those personal tasks I need to accomplish in March, things like the filling out of yearly tax forms, car and apartment insurance renewals, etc. My other major task has been to make sure my apartment is reasonably clean and that my caregiver (Josephine) will be happy with her accommodations. She gets a room with a good view of the gardens.
I’ve also been focusing on what sort of physical activities I need to do during my recovery. Fortunately, I know a retired physiotherapist who has been able to design an exercise regimen that will help my muscle tone. I also hope to be able to walk everyday while I am recovering from transplant. Daily walking is something I have been doing for years and I hope to continue with this activity even if I only can go for small walks.
Tomorrow I go to my bone marrow transplant facility for my first injection of GCSF (Neupogen). My caregiver will be supervised for first injection and I will be watched to make sure that I do not have an immediate allergic reaction. I am told that it would be rare to have one. The bigger worry is that my bone marrow does not respond well enough to make a sufficient quantity of stem cells for next week’s aphaeresis. I will not worry about that because that’s in the hands of the Fates.
Now that I am only three weeks away from my transplant I am beginning to realize that my transplant is actually going to happen. In one way this has been a good thing for me because I am becoming more focused on what I need to do. But I also find myself feeling more anxious. It is a bit like having a big date in a few days and wondering how it will all turn out.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Stemming the tide: Wobbles & his transplant
Wishing you all the best on this journey. Following your care will help me make my decision (transplant now or later). Prayers
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Stemming the tide: Wobbles & his transplant
Today is your first harvesting day, correct? I hope all goes well and you are able to collect the amount of stem cells you need in the next two days.
My husband and I were worried when he had to do his. We were told that they wanted to collect 20 million cells, and he had only collected 2 million the first day. Well, it turns out he collected 6 million the first day and about 14 million the next day. So he was able to get it done in two days with just the Neupogen shots.
Please keep us posted. I will continue to keep you in my prayers.
My husband and I were worried when he had to do his. We were told that they wanted to collect 20 million cells, and he had only collected 2 million the first day. Well, it turns out he collected 6 million the first day and about 14 million the next day. So he was able to get it done in two days with just the Neupogen shots.
Please keep us posted. I will continue to keep you in my prayers.
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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: Stemming the tide: Wobbles & his transplant
My stem cell harvesting did begin on Tuesday, February 21. Before commenting on the results of day 1, I’ll just explain my day 1 of aphaeresis. I went into the aphaeresis ward around 8 AM after getting a ride to Vancouver General Hospital by volunteer drivers. The hospital staff were just excellent in getting me settled and in explaining how my day was going to proceed. At this point I felt quite positive about getting good results.
The next step was to get down to business. I was given a bed with an aphaeresis machine immediately adjacent to it. The nurses inserted two IV needles, one into each arm. The inlet side had the larger needle. The needle itself was left inside my arm during the collection process. This meant that I had to keep that arm relatively immobile. I decided to accept the option of having this arm loosely tied down so that I did not inadvertently move it. The IV in my other arm was like a standard IV (needle removed with flexible plastic tube inserted into vein) and I was able to press buttons and use my cell phone.
After IV’s were inserted, the aphaeresis machine began to whirl and the collection process started. The toughest part was not to get too bored while I waited the 6 hours for the harvesting to be completed. I snoozed, watched TV, and listened to music.
Once the harvest was completed, the collected cells were sent to the lab to be counted. I then had an hour to kill, which I did by going to the hospital cafeteria for coffee and chocolate fudge cake. Yum!
The collection process itself went much better than I had feared and for those thinking of having a stem cell harvesting session, I would advise not getting too anxious over it. Sure, it is not a pleasant day, but it is certainly quite manageable.
Although the collection process itself went well, the results of my day 1 harvesting were disappointing. The goal was to collect 2.5 million stem cells per kg of my body weight. We only managed to get 0.33 million per kilogram. I was shocked by this low count because I had hoped that I would breeze through. I certainly felt despair at that moment.
But the doctors and nurses were quite supportive and told me that this sort of thing happens and that we would change tactics. I had been taking G-CSF (Neupogen) and would continue to take this for round 2. However, a new drug, Mozobil (plerixafor), would be added. I was given a shot of Mozobil around 6 PM, but I promptly got one of the side effects (diarrhea and stomach cramps). This took a while to settle down and I finally managed to get out of the hospital at 8 PM, a long day for me.
Day 2 harvesting went much better with me getting an additional 0.88 M/kg. This gives me a total of 1.21 M/kg, still about 50% shy. At the end of day 2 I was given another shot of Plerixafor (and another round of side effects). And here I am at home getting ready for tomorrow’s day 3 of collection.
I sign off now feeling tired, but still hopefull I’ll get enough stem cells before the weekend.
Joe
The next step was to get down to business. I was given a bed with an aphaeresis machine immediately adjacent to it. The nurses inserted two IV needles, one into each arm. The inlet side had the larger needle. The needle itself was left inside my arm during the collection process. This meant that I had to keep that arm relatively immobile. I decided to accept the option of having this arm loosely tied down so that I did not inadvertently move it. The IV in my other arm was like a standard IV (needle removed with flexible plastic tube inserted into vein) and I was able to press buttons and use my cell phone.
After IV’s were inserted, the aphaeresis machine began to whirl and the collection process started. The toughest part was not to get too bored while I waited the 6 hours for the harvesting to be completed. I snoozed, watched TV, and listened to music.
Once the harvest was completed, the collected cells were sent to the lab to be counted. I then had an hour to kill, which I did by going to the hospital cafeteria for coffee and chocolate fudge cake. Yum!
The collection process itself went much better than I had feared and for those thinking of having a stem cell harvesting session, I would advise not getting too anxious over it. Sure, it is not a pleasant day, but it is certainly quite manageable.
Although the collection process itself went well, the results of my day 1 harvesting were disappointing. The goal was to collect 2.5 million stem cells per kg of my body weight. We only managed to get 0.33 million per kilogram. I was shocked by this low count because I had hoped that I would breeze through. I certainly felt despair at that moment.
But the doctors and nurses were quite supportive and told me that this sort of thing happens and that we would change tactics. I had been taking G-CSF (Neupogen) and would continue to take this for round 2. However, a new drug, Mozobil (plerixafor), would be added. I was given a shot of Mozobil around 6 PM, but I promptly got one of the side effects (diarrhea and stomach cramps). This took a while to settle down and I finally managed to get out of the hospital at 8 PM, a long day for me.
Day 2 harvesting went much better with me getting an additional 0.88 M/kg. This gives me a total of 1.21 M/kg, still about 50% shy. At the end of day 2 I was given another shot of Plerixafor (and another round of side effects). And here I am at home getting ready for tomorrow’s day 3 of collection.
I sign off now feeling tired, but still hopefull I’ll get enough stem cells before the weekend.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
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