Hi Debbie,
You are doing so incredibly well, and I really, really appreciate reading your updates. You have no idea how encouraging it is for me to read your posts which brim with optimism and joie de vivre! You sure are a force of nature ... and you look absolutely beautiful with your chic buzz cut!
All the best,
Karen
Forums
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Debbie's Stem Cell Transplant Journey
I have been reading your posts as well. I am excited to get my stem cell started! You look great!
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Tigerboy74 - Name: Mike
- Who do you know with myeloma?: Me and few others
- When were you/they diagnosed?: 2007
- Age at diagnosis: 32
Re: Debbie's Stem Cell Transplant Journey
Day +12
Yesterday was a long day at the hospital. I think we arrived at 9:15 am and didn't get home until after 3 pm. Some days it just takes a lot longer, the doctor is busy, and nurses scrambling. Thankfully, no real negative reason, just took a long time. I, also, heard a rumor that it was doctor's birthday, so I hope he was getting lots of happy wishes. Unfortunately, I didn't hear of the rumor until after I had seen him.
My counts are sky-rocketing! White blood cells up to 10.6 (day before they were 4.5) and I am making my own platelets - so it looks like I won't be needing any more blood products. Now if I can just hold on with my red blood cells, and start showing some progress there. They are stable, but I'd like to see them a bit higher.
I have a very red rash that has to do with my body's reaction to all of the activity going on with engrafting. They had given me a cream that seems to exacerbate the problem, making me red and my face swollen. So they have given me injections of a steroid to calm things down and taken away the cream. Hopefully that is now under control. But, last night I got NO sleep - must be the steroid.
The doctor would release me, but wants to get this rash under control for the next few days. BUT - tomorrow could be my last DAILY trip to the hospital!! Then I would get a day or two off here and there. : )
So, we are nearing the end of the transplant process. There is still a long recovery process, but hopefully, I am out of the woods with respect to the initial transplant!!! Woot Woot!
I would LOVE to skype a Zumba class one day with my participants - although my energy right now is still really low. I'll build it up in a week and let's see what we can do!!!
I love you all, and I can't tell you how much it means to read your comments each day! Brightens my day for sure!! I hope I have given you a clear picture of my stem cell journey. I know it is different for everyone. An upbeat attitude does help, but there are some rough days - rest is all that is needed at those times. Would I do it again to regain my myeloma-free time - in a heart beat.
Once I am home more regularly, I'll continue to post progress on here.
Yesterday was a long day at the hospital. I think we arrived at 9:15 am and didn't get home until after 3 pm. Some days it just takes a lot longer, the doctor is busy, and nurses scrambling. Thankfully, no real negative reason, just took a long time. I, also, heard a rumor that it was doctor's birthday, so I hope he was getting lots of happy wishes. Unfortunately, I didn't hear of the rumor until after I had seen him.
My counts are sky-rocketing! White blood cells up to 10.6 (day before they were 4.5) and I am making my own platelets - so it looks like I won't be needing any more blood products. Now if I can just hold on with my red blood cells, and start showing some progress there. They are stable, but I'd like to see them a bit higher.
I have a very red rash that has to do with my body's reaction to all of the activity going on with engrafting. They had given me a cream that seems to exacerbate the problem, making me red and my face swollen. So they have given me injections of a steroid to calm things down and taken away the cream. Hopefully that is now under control. But, last night I got NO sleep - must be the steroid.
The doctor would release me, but wants to get this rash under control for the next few days. BUT - tomorrow could be my last DAILY trip to the hospital!! Then I would get a day or two off here and there. : )
So, we are nearing the end of the transplant process. There is still a long recovery process, but hopefully, I am out of the woods with respect to the initial transplant!!! Woot Woot!
I would LOVE to skype a Zumba class one day with my participants - although my energy right now is still really low. I'll build it up in a week and let's see what we can do!!!
I love you all, and I can't tell you how much it means to read your comments each day! Brightens my day for sure!! I hope I have given you a clear picture of my stem cell journey. I know it is different for everyone. An upbeat attitude does help, but there are some rough days - rest is all that is needed at those times. Would I do it again to regain my myeloma-free time - in a heart beat.
Once I am home more regularly, I'll continue to post progress on here.
Re: Debbie's Stem Cell Transplant Journey
Debbie:
I have tears in my eyes. I'm so happy for you!!
Thank you for taking us on your journey. It helps with ours.
My counts are sky-rocketing!
I have tears in my eyes. I'm so happy for you!!
Thank you for taking us on your journey. It helps with ours.
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wekebu - Name: Wendy
- Who do you know with myeloma?: Hubby
- When were you/they diagnosed?: Jan 2016
- Age at diagnosis: 55
Re: Debbie's Stem Cell Transplant Journey
So glad to hear this! Congrats! 
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Debbie's Stem Cell Transplant Journey
Hello Deb,
I read all your posts this morning and you are amazing. I was diagnosed with multiple myeloma on January 22 this year. Treatment with subq Velcade twice weekly along with 10 x cyclophosphamide tablets and 5 x dex the morning of injection and 5 days thereafter. This was for two cycles. Third cycle went to weekly reducing cyclo to 6 tabs and only 5 dex the day of injection. This was due to my white cell count being 3.4 in early March. Yesterday's blood test shows it's now up to 5.9.
Next Friday, April 8, I am in outpatients for big chemo dose of cyclophosphamide intravenously in preparation for stem cell collection. Daily injections of Neupogen to stimulate cell growth. Then collection will be on April 18. No date for transplant but it won't be before June. I will keep you updated in my progress.
Thank you for your encouragement that I read in your posts. I do remain positive myself.
I read all your posts this morning and you are amazing. I was diagnosed with multiple myeloma on January 22 this year. Treatment with subq Velcade twice weekly along with 10 x cyclophosphamide tablets and 5 x dex the morning of injection and 5 days thereafter. This was for two cycles. Third cycle went to weekly reducing cyclo to 6 tabs and only 5 dex the day of injection. This was due to my white cell count being 3.4 in early March. Yesterday's blood test shows it's now up to 5.9.
Next Friday, April 8, I am in outpatients for big chemo dose of cyclophosphamide intravenously in preparation for stem cell collection. Daily injections of Neupogen to stimulate cell growth. Then collection will be on April 18. No date for transplant but it won't be before June. I will keep you updated in my progress.
Thank you for your encouragement that I read in your posts. I do remain positive myself.
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ChrissyBAustralia - Name: Christine Bates
- Who do you know with myeloma?: Chtistine Bates
- When were you/they diagnosed?: Jan 22nd 2016
- Age at diagnosis: 53
Re: Debbie's Stem Cell Transplant Journey
Good luck to you on your future stem cell transplant! Yesterday I was released from my daily trips to the hospital. Now it will just be three times a week and then gradually tapering off. I am still taking prednisone to control a rash, but hopefully that will be finished in a few days!
For now, rest at home and gradually increase activity.
I can't wait for time to pass and to be able to interact with my family and grandchildren. I just need to hug them! Well, that will be awhile yet.
Patience ...
For now, rest at home and gradually increase activity.
I can't wait for time to pass and to be able to interact with my family and grandchildren. I just need to hug them! Well, that will be awhile yet.
Patience ...
Re: Debbie's Stem Cell Transplant Journey
Sound like you are doing great. I am on Day 76 after SCT and walking 5 miles a day. You will be amazed how your energy comes back. I still nap every day though.
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cherylp - Name: CherylP
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Sept 2015
- Age at diagnosis: 45
Re: Debbie's Stem Cell Transplant Journey
Hi! I am on Day 23!
I had a little bit of a set back the past 3 days. Remember the rash I had developed with engraftment? Well they had put me on an IV steroid, and then prednisone when I was released. They tapered the prednisone a bit too quickly for my body and I crashed. Spent one full day and night sleeping. The next day I still couldn't get up off the couch. By the third day my energy was coming back, but the rash came back too. So, yesterday, back on the prednisone with a plan to taper s l o w l y. My body just seems to react!
Other than that, I'm healing and staying in the house. Exercising very gradually. We, also, hit on a good TV series (Downton Abbey) and my husband and I have been enjoying that. We are nearing the end of this show, and I will miss that.
Visiting with the grandkids on FaceTime helps to stay in touch. I'm also web-surfing planning a nice vacation with the family (when I am able to travel and do the things that I want to do - like scuba dive). So, that has been a fun way to travel (at least in cyberspace) and look at all of the beautiful places in the Carribean.
I'm hoping soon that the weather will change and that it will be okay for me to walk around outside. Anyone want to share about how far along in the process before they were taking walks outside? We live in the country with LOTS of farm fields, so I'm a bit hesitant. I'll have to watch it during cultivating and planting season, I'm sure.
I had a little bit of a set back the past 3 days. Remember the rash I had developed with engraftment? Well they had put me on an IV steroid, and then prednisone when I was released. They tapered the prednisone a bit too quickly for my body and I crashed. Spent one full day and night sleeping. The next day I still couldn't get up off the couch. By the third day my energy was coming back, but the rash came back too. So, yesterday, back on the prednisone with a plan to taper s l o w l y. My body just seems to react!
Other than that, I'm healing and staying in the house. Exercising very gradually. We, also, hit on a good TV series (Downton Abbey) and my husband and I have been enjoying that. We are nearing the end of this show, and I will miss that.
Visiting with the grandkids on FaceTime helps to stay in touch. I'm also web-surfing planning a nice vacation with the family (when I am able to travel and do the things that I want to do - like scuba dive). So, that has been a fun way to travel (at least in cyberspace) and look at all of the beautiful places in the Carribean.
I'm hoping soon that the weather will change and that it will be okay for me to walk around outside. Anyone want to share about how far along in the process before they were taking walks outside? We live in the country with LOTS of farm fields, so I'm a bit hesitant. I'll have to watch it during cultivating and planting season, I'm sure.
Re: Debbie's Stem Cell Transplant Journey
Debbie,
You cannot imagine what your sharing has meant to me. I have a stem cell transplant scheduled in June of this year and have been apprehensive about the whole procedure.
I was diagnosed in September 2015 and treatments included Cytoxan, Velcade and dex. Don't remember the numbers.
My oncologist pushed for me to have a transplant after the 4th round but, as I'm a high school librarian, I wanted to finish the school year and was running out of sick leave. So, I did the harvesting during spring break the week after Easter and I've scheduled the transplant in June.
It will be right after school is out and a short visit to my family (including my father's funeral at Arlington Cemetery almost six months after he died in late January). We get home on June 5th and have to be at MUSC (Charleston, SC) on the 6th.
I'm trying to decide whether to retire at the end of this school year or hang in there one more year to make it to 28 (seems to be the magic number for retirement in SC).
Since we are almost the same age (I turned 60 in February), I feel like I can relate just a bit.
I enjoy Zumba but haven't been able to participate due to pain in my right hip. The docs think it's a combination of arthritis, bursitis and tendonitis and predicts a hip replacement in my future.
My other concern is that I can return to work the end of July or early August and complete one more year. At day 23 you seem to be healing and adjusting well.
I look forward to reading more as I prepare for June.
You cannot imagine what your sharing has meant to me. I have a stem cell transplant scheduled in June of this year and have been apprehensive about the whole procedure.
I was diagnosed in September 2015 and treatments included Cytoxan, Velcade and dex. Don't remember the numbers.
My oncologist pushed for me to have a transplant after the 4th round but, as I'm a high school librarian, I wanted to finish the school year and was running out of sick leave. So, I did the harvesting during spring break the week after Easter and I've scheduled the transplant in June.
It will be right after school is out and a short visit to my family (including my father's funeral at Arlington Cemetery almost six months after he died in late January). We get home on June 5th and have to be at MUSC (Charleston, SC) on the 6th.
I'm trying to decide whether to retire at the end of this school year or hang in there one more year to make it to 28 (seems to be the magic number for retirement in SC).
Since we are almost the same age (I turned 60 in February), I feel like I can relate just a bit.
I enjoy Zumba but haven't been able to participate due to pain in my right hip. The docs think it's a combination of arthritis, bursitis and tendonitis and predicts a hip replacement in my future.
My other concern is that I can return to work the end of July or early August and complete one more year. At day 23 you seem to be healing and adjusting well.
I look forward to reading more as I prepare for June.
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mmfighter256
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