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Re: Stemming the tide: Wobbles & his transplant
I find your journey very inspiring sir. I officially started mine yesterday with my first radiation treatments (left humerus, right femur). Two weeks of radiation followed by four 21-day cycles of cyclophosphamide, Velcade, and dexamethasone (CyBorD) treatment. A stem cell transplant is planned for July. I'm thankful for every day I wake up to, and live one day at a time with as little stress, fear, and anxiety as I can. I will continue to monitor your posts and the posts of all those here on The Myeloma Beacon. Aloha and God Bless!
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Bo808 - Name: Bo
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb' 2017
- Age at diagnosis: 54
Re: Stemming the tide: Wobbles & his transplant
Kathleen: Thanks for your words of encouragement.
Brian: Good luck on your upcoming treatments, including your stem cell transplant. I have been very fortunate in that I have not had any need for radiation. My cancer cells seem to be primarily in my bone marrow.
Day +9
On this day I developed my first fever (37.7 C, 99.9 F). This resulted in a change in my treatment protocol. I went on two IV antibiotics instead of a broad-spectrum antibiotic named copra (?). One antibiotic was for gram positive bacteria and the other was for gram negative bacteria. I was also given extra fluids.
Instead of coming into hospital every other day, I am now coming into hospital everyday. I feel I’ve lost my “personal” time, although I know it is for the best.
Day +10
This was a pretty bad day with continued low-grade fever and a seven-hour visitation. My blood pressure dropped very low (below 80/50). There was some discussion about admitting me as an inpatient, but I rallied sufficiently to be sent home. I missed my daily walk.
Day +11
Day 11 was almost an exact repeat of Day +10, except for the very positive result that my WBC increased from its lowest level (0.1 per nanoliter) to 0.2 per nanoliter. I become hopeful.
Day +12
This day is much like Day 11 except now my IV antibiotic is a single broad-spectrum antibiotic. I do not take any oral antibiotics at this stage. Also my WBC count is at 0.3 per nanoliter. I now believe engraftment has started. Relief. Also my nausea is slightly better. On the nausea front, I discovered some leftover crystallized ginger, the type used to make a traditional English Christmas pudding. It seems to help.
Brian: Good luck on your upcoming treatments, including your stem cell transplant. I have been very fortunate in that I have not had any need for radiation. My cancer cells seem to be primarily in my bone marrow.
Day +9
On this day I developed my first fever (37.7 C, 99.9 F). This resulted in a change in my treatment protocol. I went on two IV antibiotics instead of a broad-spectrum antibiotic named copra (?). One antibiotic was for gram positive bacteria and the other was for gram negative bacteria. I was also given extra fluids.
Instead of coming into hospital every other day, I am now coming into hospital everyday. I feel I’ve lost my “personal” time, although I know it is for the best.
Day +10
This was a pretty bad day with continued low-grade fever and a seven-hour visitation. My blood pressure dropped very low (below 80/50). There was some discussion about admitting me as an inpatient, but I rallied sufficiently to be sent home. I missed my daily walk.
Day +11
Day 11 was almost an exact repeat of Day +10, except for the very positive result that my WBC increased from its lowest level (0.1 per nanoliter) to 0.2 per nanoliter. I become hopeful.
Day +12
This day is much like Day 11 except now my IV antibiotic is a single broad-spectrum antibiotic. I do not take any oral antibiotics at this stage. Also my WBC count is at 0.3 per nanoliter. I now believe engraftment has started. Relief. Also my nausea is slightly better. On the nausea front, I discovered some leftover crystallized ginger, the type used to make a traditional English Christmas pudding. It seems to help.
- My WCB Mar 21, 2017.png (12.24 KiB) Viewed 1378 times
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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,
It's been very interesting to read your stem cell transplant experience. Like others, I am very impressed that you've been able to avoid some of the intense side effects that others have experienced during their transplants. Here's hoping the side effects continue to be (relatively) mild, and that you get a really, really long remission.
P.S. - The graph is great. Thanks for putting it together and sharing it with us.
It's been very interesting to read your stem cell transplant experience. Like others, I am very impressed that you've been able to avoid some of the intense side effects that others have experienced during their transplants. Here's hoping the side effects continue to be (relatively) mild, and that you get a really, really long remission.
P.S. - The graph is great. Thanks for putting it together and sharing it with us.
Re: Stemming the tide: Wobbles & his transplant
Hi Cheryl - I had hoped that my experience would be of interest to some of the participants of this forum. So far I believe my transplant journey has been very much a middle-of-the-road affair. I am obeying all the traffic rules and watching those dangerous intersections. I’ll try to keep posting the graph of WCB’s versus time. I've included my latest below, at the end of this post.
Day +14
Days +13 and +14 have both been good for me. My nausea has noticeably diminished, I feel stronger and I am eating more. On Day +13 my first neutrophils were detected and on Day +14 the first monocytes were recorded. I am very pleased abut this. I am recovering.
However, I should mention that I had been given on Days +12 and +13 subcutaneous injections of Neupogen (filgrastim), a substance which promotes the release of white blood cells into the peripheral blood system. The doctor explained that this is often done to help a person fight off infections. It does not speed the overall recovery from the massive melphalan infusion.
Interestingly, I had my first dream last night. I think my psyche is starting to heal. I’ll take more of that.
Joe
Day +14
Days +13 and +14 have both been good for me. My nausea has noticeably diminished, I feel stronger and I am eating more. On Day +13 my first neutrophils were detected and on Day +14 the first monocytes were recorded. I am very pleased abut this. I am recovering.
However, I should mention that I had been given on Days +12 and +13 subcutaneous injections of Neupogen (filgrastim), a substance which promotes the release of white blood cells into the peripheral blood system. The doctor explained that this is often done to help a person fight off infections. It does not speed the overall recovery from the massive melphalan infusion.
Interestingly, I had my first dream last night. I think my psyche is starting to heal. I’ll take more of that.
Joe
- My WCB Mar 23.png (13.44 KiB) Viewed 1243 times
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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
Thank you for sharing your journey. May you continue to do so well. Great attitude, so positive, awesome to see this.
Soon I go for consult on transplant. One year ago yesterday diagnosis. Thankful in remission now. Big decision to make.
I will follow your journey. Many walk beside you! Keep pushing.
Soon I go for consult on transplant. One year ago yesterday diagnosis. Thankful in remission now. Big decision to make.
I will follow your journey. Many walk beside you! Keep pushing.
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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
Hi Joe.
Thanks for continuing to share your journey with us. I think it is great to see those numbers come up. It is sunny here today, which has been rare of late. I hope you get a chance for a walk.
Thanks for continuing to share your journey with us. I think it is great to see those numbers come up. It is sunny here today, which has been rare of late. I hope you get a chance for a walk.
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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
Colin: Just to let you know, I finally lost my beard around Day +15. Surprisingly, I am able to sport a moustache. My friends are forming into two groups: (1) grow the beard back or (2) keep the moustache only.
Hopeful1: Thanks for your support and I wish you good luck with your decision about whether to have a transplant or not. There is a lot of good information here at the Beacon site. Remember to focus on what you want to accomplish, or in sport’s lingo, “Keep your eye on the ball.”
Day +19
Alas, I’ve run into a few problems. My WBC counts have plateaued and my platelet concentration remains stubbornly low. But the biggest problem is that I have developed deep vein thrombosis (DVT) in my upper left calf. It is very painful and has made it difficult for me to walk more than 100 feet.
Despite these problems, I remain upbeat and am determined to have a positive outcome.
Hopeful1: Thanks for your support and I wish you good luck with your decision about whether to have a transplant or not. There is a lot of good information here at the Beacon site. Remember to focus on what you want to accomplish, or in sport’s lingo, “Keep your eye on the ball.”
Day +19
Alas, I’ve run into a few problems. My WBC counts have plateaued and my platelet concentration remains stubbornly low. But the biggest problem is that I have developed deep vein thrombosis (DVT) in my upper left calf. It is very painful and has made it difficult for me to walk more than 100 feet.
Despite these problems, I remain upbeat and am determined to have a positive outcome.
- WBC20170328.png (20.77 KiB) Viewed 997 times
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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. I am new to the forum and have been following your posts and progress. I look forward to your reports and surely hope you have a steady recovery. Cheers ... 
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WholeNotherWorld - Who do you know with myeloma?: my husband
- When were you/they diagnosed?: Dec. 2016
- Age at diagnosis: 67
Re: Stemming the tide: Wobbles & his transplant
Sorry to hear of the DVT. I've heard they can be very painful 
Have faith that the doctors can correct the WBC and platelet level. Before you know it they will be with in the normal range. Sending healing prayers your way.
Have faith that the doctors can correct the WBC and platelet level. Before you know it they will be with in the normal range. Sending healing prayers your way. -
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
Hope your DVT can be controlled easily. You have been an active walker throughout this journey and I am sure that fitness will pay off here. Cheering for you to make a speedy recovery.
It looks like the weather in Vancouver is changing for the better and that should be some incentive to get out and enjoy some more walking. Be careful of the sun's rays however.
It looks like the weather in Vancouver is changing for the better and that should be some incentive to get out and enjoy some more walking. Be careful of the sun's rays however.
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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
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