Today I check in with the Seattle Cancer Care Alliance (SCCA) transplant team. This is day one of a battery of tests and meetings in preparation for an autologous stem cell transplant. Bloodwork starts today, a bone marrow biopsy on Thursday, and a plethora of other tests and consultations.
The preliminary schedule has a central line going in July 6. Because I've had 9 cycles of induction therapy (including 4 cycles of Revlimid and 5 of Pomalyst) and my M-spike plateaued at about 0.5 g/dL (5 g/L), I'm prepared for a combination of chemo and growth factor medications for mobilization in early July. My actual transplant date is targeted for about August 10.
As I learned today, this is all preliminary depending on testing and my response.
I've found the posts by those who've walked this road before me incredibly helpful, especially AC in Florida and dogmom's hubby who are both in very early stages of their recovery. I will try to keep up with my reporting of my experience as events unfold. I also know this forum will be a wealth of support and encouragement and I thank you all in advance.
Forums
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Mark's stem cell transplant adventure (SCCA)
Thank you, Mark, for volunteering to share your stem cell transplant experience with members of the Beacon community. We hope the transplant experience is a smooth one for you and your family.
For others reading this who may be new to the Beacon forum, you should know that there are many other forum threads like this one, describing the stem cell transplant experiences of other Beacon community members. There is a list of these "transplant journal" threads at the end of this Beacon forum posting:
"Useful links to existing forum discussions"
in the section labeled
"Stem Cell Transplant Experiences of Beacon Forum Members"
Note that this "Useful links" posting is always listed as the first discussion thread in the "Treatments & Side Effects" section of the forum.
There also is a link to the "Useful links" posting in the sidebar that appears on every page of the forum. It's the last link in the part of the sidebar titled "Forum Discussions - View By Specific Subject".
For others reading this who may be new to the Beacon forum, you should know that there are many other forum threads like this one, describing the stem cell transplant experiences of other Beacon community members. There is a list of these "transplant journal" threads at the end of this Beacon forum posting:
"Useful links to existing forum discussions"
in the section labeled
"Stem Cell Transplant Experiences of Beacon Forum Members"
Note that this "Useful links" posting is always listed as the first discussion thread in the "Treatments & Side Effects" section of the forum.
There also is a link to the "Useful links" posting in the sidebar that appears on every page of the forum. It's the last link in the part of the sidebar titled "Forum Discussions - View By Specific Subject".
Re: Mark's stem cell transplant adventure (SCCA)
I forgot to say ... In the spirit of keeping things in perspective, my wife and I spent a couple days at a lake relaxing before the hard work starts ...
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Mark's stem cell transplant adventure (SCCA)
Mark, I wish you all the best. Will it be outpatient or will you be in the hospital the entire time?
As other people have stated, I think the engraftment time was the hardest for my husband. The effects from the high-dose chemo were easier for him than engraftment. Once the engraftment was done, he has gotten steadily better. The tip about eating ice during chemo worked for us. He had no mouth sores at all.
Keep us posted.
As other people have stated, I think the engraftment time was the hardest for my husband. The effects from the high-dose chemo were easier for him than engraftment. Once the engraftment was done, he has gotten steadily better. The tip about eating ice during chemo worked for us. He had no mouth sores at all.
Keep us posted.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Mark's stem cell transplant adventure (SCCA)
Thank you Cathy. The transplants at SCCA are outpatient. Your hubby's story has been so encouraging.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Mark's stem cell transplant adventure (SCCA)
Do you live close enough to be able to stay at home or will you have to relocate as we did for the time?
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Mark's stem cell transplant adventure (SCCA)
We live about an hour away and will need to relocate. We hope to get an apartment in clinic housing, but rooms are limited. There are also a few hotel options. While I don't want to impose on family, I also have siblings within a half hour if other options don't work.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Mark's stem cell transplant adventure (SCCA)
Well it is somewhat harder being away from home, but time goes faster than you think with daily clinic appointments the first two weeks, etc. We have been here 3 weeks today and I will not lie; we are ready to get home.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Mark's stem cell transplant adventure (SCCA)
Hi Mark.
We followed along with AC's and dogmom's posts as well, though we were late to the game, as my husband had an outpatient ASCT the same day as dogmom's husband.
It's really hard to give advice, as every transplant seems as unique as every myeloma.
That said, ours went swimmingly. No mucositis, no vomiting or real diarrhea (some loose stools), a lot of fatigue, nausea, cramping, and some melphalan cystitis that led to a lot of urination. He ate throughout. he got hydration daily on Days +3 - +13 for electrolytes mainly, and felt that helped. Only one platelet transfusion on Day +9. PICC pulled on Day +13 with platelets at 38. Now on weekly followup with normal WBC and platelets and a Hct of 36.8 on Day +18. We walked 4 miles slowly today.
I'll second the ice with the melphalan and suggest you go overboard. We brought a thermos of ice water and a thermos of frozen pops and a third of ice cream to the infusion and he ate cold that whole day. There are a surprising number of online recipes for healthy frozen pops. We bought molds which were not really used as he hated sweet pretty early on.
We started antioxidants and herbs infusions with matcha green tea on the day of his "rebirth", Day Zero, hoping to spare the gut. Early diet was a lot of pre-frozen and fresh homemade soups, purees, stews, chowders, and mashed potatoes, sweet potatoes and rutabagas with creme fraiche. He couldn't stand sweet (reporting even water tasted sweet), so Ensure and Boost were out, but he ate so many hard boiled eggs and fresh muffins from frozen batter with nut butter. I've read about and cook with a lot of antimicrobial herbs and spices. He ate 2 cups of plain whole fat organic yogurt daily. I also cooked with bone broth - thinking what better for bone marrow recovery than bone and marrow.
We'd also recommend an oral hygiene regimen of salt, baking soda, and warm water gargles as you won't be able to brush your teeth for a spell.
So much of this for us was mental stress of the unknown and fear of the rare but serious adverse events. whatever you both are doing for stress relief will remain paramount.
We both wish you both well.
We followed along with AC's and dogmom's posts as well, though we were late to the game, as my husband had an outpatient ASCT the same day as dogmom's husband.
It's really hard to give advice, as every transplant seems as unique as every myeloma.
That said, ours went swimmingly. No mucositis, no vomiting or real diarrhea (some loose stools), a lot of fatigue, nausea, cramping, and some melphalan cystitis that led to a lot of urination. He ate throughout. he got hydration daily on Days +3 - +13 for electrolytes mainly, and felt that helped. Only one platelet transfusion on Day +9. PICC pulled on Day +13 with platelets at 38. Now on weekly followup with normal WBC and platelets and a Hct of 36.8 on Day +18. We walked 4 miles slowly today.
I'll second the ice with the melphalan and suggest you go overboard. We brought a thermos of ice water and a thermos of frozen pops and a third of ice cream to the infusion and he ate cold that whole day. There are a surprising number of online recipes for healthy frozen pops. We bought molds which were not really used as he hated sweet pretty early on.
We started antioxidants and herbs infusions with matcha green tea on the day of his "rebirth", Day Zero, hoping to spare the gut. Early diet was a lot of pre-frozen and fresh homemade soups, purees, stews, chowders, and mashed potatoes, sweet potatoes and rutabagas with creme fraiche. He couldn't stand sweet (reporting even water tasted sweet), so Ensure and Boost were out, but he ate so many hard boiled eggs and fresh muffins from frozen batter with nut butter. I've read about and cook with a lot of antimicrobial herbs and spices. He ate 2 cups of plain whole fat organic yogurt daily. I also cooked with bone broth - thinking what better for bone marrow recovery than bone and marrow.
We'd also recommend an oral hygiene regimen of salt, baking soda, and warm water gargles as you won't be able to brush your teeth for a spell.
So much of this for us was mental stress of the unknown and fear of the rare but serious adverse events. whatever you both are doing for stress relief will remain paramount.
We both wish you both well.
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Mark's stem cell transplant adventure (SCCA)
Last week I completed two weeks of rather grueling tests, classes, and meetings. It was exhausting, but I felt it was all necessary.
I'm sure I will forget something, but appointments included:
A bone marrow biopsy, 3x blood draws (about 8 vials each), EKG, echo cardiogram, pulmonary testing, full body MRI, full skeleton x-rays, 2 dental visits, culture swabs, food safety class, nutritionist consult, pharmacy consult, social worker meeting, doctors' visits, etc.
The good news is that the bone marrow biopsy showed only 3% involvement in the marrow (i.e., 3 percent bone marrow plasma cell percentage) and my other tests were very good. This led the team to decide we do not need previously planned conditioning chemo and I can go straight to mobilization of the stem cells.
I'll get a final treatment plan on Tuesday and placement of the central line. Growth factor injections should start on Friday and harvesting could start as soon as Monday the 11th. That might put the transplant into the week of the 18th. When I started this process, we thought there would be intermediary chemo and the transplant would be approximately August 8.
I'm happy to hear the good test results and the shortening of the schedule.
I'm sure I will forget something, but appointments included:
A bone marrow biopsy, 3x blood draws (about 8 vials each), EKG, echo cardiogram, pulmonary testing, full body MRI, full skeleton x-rays, 2 dental visits, culture swabs, food safety class, nutritionist consult, pharmacy consult, social worker meeting, doctors' visits, etc.
The good news is that the bone marrow biopsy showed only 3% involvement in the marrow (i.e., 3 percent bone marrow plasma cell percentage) and my other tests were very good. This led the team to decide we do not need previously planned conditioning chemo and I can go straight to mobilization of the stem cells.
I'll get a final treatment plan on Tuesday and placement of the central line. Growth factor injections should start on Friday and harvesting could start as soon as Monday the 11th. That might put the transplant into the week of the 18th. When I started this process, we thought there would be intermediary chemo and the transplant would be approximately August 8.
I'm happy to hear the good test results and the shortening of the schedule.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
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