Day 0
Yesterday was day 0 for me. I had my stem cells, all four bags, successfully infused.
The day started early (8:00 a.m.), at which time I was given IV fluids and hydrocortisone (more steroids). This took only a couple of hours and I was then allowed to wander the hospital complex for a few hours. I took the opportunity to go for a walk and to go to local café for coffee and a treat.
Around 1:30 PM I reported back to my room and then resumed having more premeds (more hydrocortisone, Tylenol, and Benadryl). Around 2:30 p.m. my frozen stem cells arrived, which I, of course, warmly greeted. Initially a doctor was present for the first 30 minutes and a nurse was always present during the stem cell transfusion.
The procedure was like clockwork. Once one bag was infused, another bag appeared. I had no real discomfort, except for a slight tendency to have hiccups and a slight tightness in my chest. These side effects were supposed to be due to the presence of the cryoprotectant DMSO (dimethyl sulfoxide) in my stored stem cell bags. Another side effect of the DMSO was that it produced an odour, which I did not smell, but the others in the room did. The nurse did provide some essences to cover the smell. Nobody complained, perhaps out of politeness.
The transplant only took about 2 hours, but I had to wait an additional 2 hours before being allowed to leave. The whole day was a twelve hour affair. I was exhausted at the end.
I must also say I have high praise for the staff that treated me. They were super, very informative, and caring.
Day +1
I returned to hospital today for further observation as I had signs of low blood pressure. I was given more fluids and needed to have bandages changed because my Hickman line is still weeping some blood.
The good news is that I do not have to go to hospital tomorrow. A day off! I now start on a routine of one day on and one day off hospital visits. That’s the plan.
I am feeling reasonably good and managed a half hour walk today. I’m busy with house chores and trying to get prepared for the more difficult days ahead.
I forgot to say in my last post (Day -1) that I did eat ice chips and flavoured ice cones in an attempt to ward off mucositis from the chemo treatment. Most of the advice I received from hospital staff was, “it can’t hurt”. The resident pharmacist kindly did some research for me. She said I should start eating the ice chips 30 minutes prior to the chemo and continue for 6 hours after last of chemo was delivered. She explained that the half-life of the melphalan is 75 minutes and that 6 hours is roughly equal to five half life times.
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
Day +3
Yesterday on Day +2 I had my break day, in that I did not have to go to hospital as an outpatient. That was most welcomed by me, as I had been feeling that I was back at work trudging off to do my duty. Nothing like a weekend break to pick up the spirits.
Both yesterday and today I’ve been able to continue my daily walk despite the rain. I only walk for 30 - 40 minutes, but I still feel it’s worthwhile. Next week I get to see a physiotherapist to see what other activities I should pursue.
My main complaint has been nausea, which I am trying to manage with prochlorperazine (Compazine). At the urging of my nurses, I am taking a proactive approach to try to keep the nausea to its minimum. This basically means that at the first sign of nausea I take a 10 mg pill of prochlorperazine.
On today’s visit to the hospital my Hickman Line bandages were made “waterproof,” even though I still have a slight amount of bleeding. Tonight I should be able to take a shower instead of sponge baths. Yeah for that!
Yesterday on Day +2 I had my break day, in that I did not have to go to hospital as an outpatient. That was most welcomed by me, as I had been feeling that I was back at work trudging off to do my duty. Nothing like a weekend break to pick up the spirits.
Both yesterday and today I’ve been able to continue my daily walk despite the rain. I only walk for 30 - 40 minutes, but I still feel it’s worthwhile. Next week I get to see a physiotherapist to see what other activities I should pursue.
My main complaint has been nausea, which I am trying to manage with prochlorperazine (Compazine). At the urging of my nurses, I am taking a proactive approach to try to keep the nausea to its minimum. This basically means that at the first sign of nausea I take a 10 mg pill of prochlorperazine.
On today’s visit to the hospital my Hickman Line bandages were made “waterproof,” even though I still have a slight amount of bleeding. Tonight I should be able to take a shower instead of sponge baths. Yeah for that!
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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
Glad to hear that you are doing well and got the transplant started. Hang in there and be strong, the end result will be well worth it in the end!
Good luck and prayers for your continued recovery
Good luck and prayers for your continued recovery
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Dippydoo - Name: DippyDoo
- Who do you know with myeloma?: Myself MGUS
- When were you/they diagnosed?: 2/9/2017
- Age at diagnosis: 49
Re: Stemming the tide: Wobbles & his transplant
Day +4
Dippydoo: Thanks for your thoughts.
Yesterday was Day +4. So far I’ve been managing reasonably well, but now I am beginning to feel more and more of the negative effects of the heavy duty melphalan treatment. I’ve had persistent nausea but not to the point of vomiting. I am finding that the anti-emetic meds are helpful, as well as eating in small quantities.
I managed yet another good walk yesterday despite our never ending rain. I cannot believe how much it has rained in the last few days.
Today I go to outpatient clinic where I will have more blood work performed and have a chance to report on some additional side effects. I seem to be getting skin flaking.
What a journey!
Dippydoo: Thanks for your thoughts.
Yesterday was Day +4. So far I’ve been managing reasonably well, but now I am beginning to feel more and more of the negative effects of the heavy duty melphalan treatment. I’ve had persistent nausea but not to the point of vomiting. I am finding that the anti-emetic meds are helpful, as well as eating in small quantities.
I managed yet another good walk yesterday despite our never ending rain. I cannot believe how much it has rained in the last few days.
Today I go to outpatient clinic where I will have more blood work performed and have a chance to report on some additional side effects. I seem to be getting skin flaking.
What a journey!
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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
Hang in there Joe, you are doing great. By the way, just over here on Vancouver Island we didn't get all that rain you got in Vancouver.
Let me know when or if your beard and head hair falls out, so I can ready myself for that. If you are like me, there isn't much head hair to lose. Are you still chewing on ice chips to ward off the mucositis?
Really great of you to keep us posted on your stem cell transplant experience. I am rooting for you to have a successful transplant and long remission. Go Joe Go!
Let me know when or if your beard and head hair falls out, so I can ready myself for that. If you are like me, there isn't much head hair to lose. Are you still chewing on ice chips to ward off the mucositis?
Really great of you to keep us posted on your stem cell transplant experience. I am rooting for you to have a successful transplant and long remission. Go Joe Go!
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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
Hi Joe,
I have taken a particular interest in reading about your stem cell transplant. It is very generous of you to share the details of what you are going through.
We have IgA kappa in common, but are on quite opposite ends of that spectrum. You appear to have developed an ability to meet whatever comes at you with directness and determination. That quality should continue to serve you well during this difficult part of your journey. Hopefully the rough seas settle out quickly into an extended period of calm for you.
The picture of Vancouver you posted looks like a great place for a walk! Glad to hear you don't wait for the sun to come out.
I am holding a good thought for you.
Kristine
I have taken a particular interest in reading about your stem cell transplant. It is very generous of you to share the details of what you are going through.
We have IgA kappa in common, but are on quite opposite ends of that spectrum. You appear to have developed an ability to meet whatever comes at you with directness and determination. That quality should continue to serve you well during this difficult part of your journey. Hopefully the rough seas settle out quickly into an extended period of calm for you.
The picture of Vancouver you posted looks like a great place for a walk! Glad to hear you don't wait for the sun to come out.
I am holding a good thought for you.
Kristine
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kap12 - Name: Kristine
- Who do you know with myeloma?: Myself (IgA MGUS)
- When were you/they diagnosed?: September 2016
Re: Stemming the tide: Wobbles & his transplant
Colin: Ha! Ha! Losing my beard has been one of my concerns from the start. I forget when I actually grew my beard, but it is about 50 years ago. It’ll be a shock to me to see a bare chinned version of myself. I wonder if the neighbourhood dogs will bark at me. Regarding ice chips, I no longer use them. I stopped about 6 hours post melphalan infusion. Send your sunshine this way.
Kristine: Thanks for expressing an interest in my journey. We IgA kappa’s have got to stick together. You’re right about Vancouver being a great place to walk. Our spring should be arriving soon, and I’m very much looking forward to spring bulbs and flowering fruit trees. I take it that you have not yet decided on whether to go for transplant? I think it is a decision that can go either way. It’s a choice after all.
Day +6
I am in a routine now with alternating days going to outpatient ward where I have blood taken and clear fluids infused. My neutrophils are now very low at 0.5 per nanoliter (normal is 2 to 7.5 per nL) and my platelets are also low at 55 per nL (normal is 150 to 400 per nL).
I’ve dropped prochlorperazine (Compazine) as my primary anti-emetic and am using a new drug called metoclopramide (Reglan). I think it works slightly better.
I am expecting to see my blood counts to be quite low for the next few days, and then I am hoping for signs of recovery around Day +10.
Kristine: Thanks for expressing an interest in my journey. We IgA kappa’s have got to stick together. You’re right about Vancouver being a great place to walk. Our spring should be arriving soon, and I’m very much looking forward to spring bulbs and flowering fruit trees. I take it that you have not yet decided on whether to go for transplant? I think it is a decision that can go either way. It’s a choice after all.
Day +6
I am in a routine now with alternating days going to outpatient ward where I have blood taken and clear fluids infused. My neutrophils are now very low at 0.5 per nanoliter (normal is 2 to 7.5 per nL) and my platelets are also low at 55 per nL (normal is 150 to 400 per nL).
I’ve dropped prochlorperazine (Compazine) as my primary anti-emetic and am using a new drug called metoclopramide (Reglan). I think it works slightly better.
I am expecting to see my blood counts to be quite low for the next few days, and then I am hoping for signs of recovery around Day +10.
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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
Hi Joe,
I wasn't clear in what I wrote about being at opposite ends of the spectrum. To clarify, I have MGUS and hope to never actually face the prospect of a transplant. Who can say? Last week I was diagnosed with anemia and hope that it is something unrelated to the MGUS. It seems as if every blood test seems to send me down another rabbit hole. I have always liked reading ahead, and your story tells about some of what is now beyond my horizon, but nonetheless there. That said, it would be all right if you loose the beard, but do whatever it takes to keep the smile! The best to you. Kristine
I wasn't clear in what I wrote about being at opposite ends of the spectrum. To clarify, I have MGUS and hope to never actually face the prospect of a transplant. Who can say? Last week I was diagnosed with anemia and hope that it is something unrelated to the MGUS. It seems as if every blood test seems to send me down another rabbit hole. I have always liked reading ahead, and your story tells about some of what is now beyond my horizon, but nonetheless there. That said, it would be all right if you loose the beard, but do whatever it takes to keep the smile! The best to you. Kristine
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kap12 - Name: Kristine
- Who do you know with myeloma?: Myself (IgA MGUS)
- When were you/they diagnosed?: September 2016
Re: Stemming the tide: Wobbles & his transplant
Kristine: Gotcha! I hope your MGUS does not turn into full blown myeloma. And don’t fret the future. Progress is being made on conquering myeloma.
Day +8
True to my expectations, my blood numbers have tanked, with neutrophils being too low to detect on standard CBC plus differential. My platelets have dropped to 23 per nanoliter. I am thinking par for the course.
I continue to fight low grade nausea and a general feeling of malaise. But still managing to go for a shortened walk.
Day +8
True to my expectations, my blood numbers have tanked, with neutrophils being too low to detect on standard CBC plus differential. My platelets have dropped to 23 per nanoliter. I am thinking par for the course.
I continue to fight low grade nausea and a general feeling of malaise. But still managing to go for a shortened walk.
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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
Wobbles:
Congrats on your progress, now time for the new stemmies to take over. I am in awe that at this phase you can do much of anything, so the fact that you are taking "short walks" is amazing and admirable. Please be very, very careful, if you are walking outside, it wouldn't take much for you to get very sick (as I am sure you know).
Keep up the great work, your an inspiration to all.
Kathleen
Congrats on your progress, now time for the new stemmies to take over. I am in awe that at this phase you can do much of anything, so the fact that you are taking "short walks" is amazing and admirable. Please be very, very careful, if you are walking outside, it wouldn't take much for you to get very sick (as I am sure you know).
Keep up the great work, your an inspiration to all.
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
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