Keep us updated, Chad. Good luck and catch up soon.
Dean
Forums
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Chad's Autologous Stem Cell Transplant Journal
Day +13
OK, the "corner was turned" on Day +12. For the first time since about Day +2, I felt really good. I had an appetite and had energy to get some things done. Today (Day +13) I feel a smidgen better! I even got about 3 hours of work done from home this afternoon. Still have some minor stomach discomfort, but no other symptoms. Getting daily Neupogen injections and my ANC is up to 0.76 already. In the next couple of days as it reaches 1.0 and beyond the doctors have talked about lifting some of the more onerous restrictions on me.
I will be curious to compare experiences with the others and later be able to see if the outcomes are vastly different or similar, and also whether we collectively thought the transplant process was worth it. Assuming I get even a decent result, so far for me the answer will be a resounding yes.
OK, the "corner was turned" on Day +12. For the first time since about Day +2, I felt really good. I had an appetite and had energy to get some things done. Today (Day +13) I feel a smidgen better! I even got about 3 hours of work done from home this afternoon. Still have some minor stomach discomfort, but no other symptoms. Getting daily Neupogen injections and my ANC is up to 0.76 already. In the next couple of days as it reaches 1.0 and beyond the doctors have talked about lifting some of the more onerous restrictions on me.
I will be curious to compare experiences with the others and later be able to see if the outcomes are vastly different or similar, and also whether we collectively thought the transplant process was worth it. Assuming I get even a decent result, so far for me the answer will be a resounding yes.
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Chad's Autologous Stem Cell Transplant Journal
Great to hear that your treatment is going so well Chad. Every day will be better, but don't be surprised if you hit a speed bump now and again. Just take it easy and listen to your body.
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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: Chad's Autologous Stem Cell Transplant Journal
Hi Chad,
I'm so glad to hear things are going well. My husband is doing pretty good. He had a couple of days where his taste buds were affected and he didn't want to eat because nothing tasted well. So for about 2 days he ate nothing. He did get fluids and he was drinking, so that kept him going. His taste buds started doing better after 2-3 days and he went back to eating. That started on the afternoon of Day +3 and continued through Day +5.
Yesterday (Day +8) was probably his worst day. He started running a fever and was the weakest he has been. They started him on antibiotics even though his fever wasn't real high (100.2 F, 37.9 C) but it turned out to be a good thing. He started feeling better later in the day and his temp was back to normal. He woke up the next day feeling much better.
His WBC bottomed out at 0.03 on Day +8 and it went up to 0.04 on Day +9, so they think he's is on the upward swing. He's been getting daily shots of Neupogen, so that should help.
I'm so glad to hear things are going well. My husband is doing pretty good. He had a couple of days where his taste buds were affected and he didn't want to eat because nothing tasted well. So for about 2 days he ate nothing. He did get fluids and he was drinking, so that kept him going. His taste buds started doing better after 2-3 days and he went back to eating. That started on the afternoon of Day +3 and continued through Day +5.
Yesterday (Day +8) was probably his worst day. He started running a fever and was the weakest he has been. They started him on antibiotics even though his fever wasn't real high (100.2 F, 37.9 C) but it turned out to be a good thing. He started feeling better later in the day and his temp was back to normal. He woke up the next day feeling much better.
His WBC bottomed out at 0.03 on Day +8 and it went up to 0.04 on Day +9, so they think he's is on the upward swing. He's been getting daily shots of Neupogen, so that should help.
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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: Chad's Autologous Stem Cell Transplant Journal
Day +15
Mark, thanks for the reminder about "speed bumps". I need to remember that I had a major transplant two weeks ago and not get ahead of myself!
Tara, sounds like your husband is about on the same track I am. I had a small fever on Day 10 (which they attribute to the engraftment happening - a good thing!) Hopefully he'll turn the corner in the next couple days. When he does, it is amazing!!!
Yesterday I got some of the best news I've ever received. Not only am I no longer neutropenic, but I am "fully engrafted". My ANC went from 0.76 to 4.6 in one day! All of my blood numbers (except platelets) were in the "normal" range. PICC line removed. Most of my restrictions have been lifted (still no sex, buffets, or sushi!), and my wife and I enjoyed a nice dinner out last night.
I've decided that three of the keys of a successful OUTPATIENT ASCT are
1. A great full time caregiver to stay on top of hygiene, diet, and meds
2. Trying to remain as physically active as possible (thanks Pouley!); and
3. A private living area where you can avoid people and germs.
I feel really blessed / fortunate that my transplant has gone this well so far. Hoping to avoid too many bumps in the road!
Mark, thanks for the reminder about "speed bumps". I need to remember that I had a major transplant two weeks ago and not get ahead of myself!
Tara, sounds like your husband is about on the same track I am. I had a small fever on Day 10 (which they attribute to the engraftment happening - a good thing!) Hopefully he'll turn the corner in the next couple days. When he does, it is amazing!!!
Yesterday I got some of the best news I've ever received. Not only am I no longer neutropenic, but I am "fully engrafted". My ANC went from 0.76 to 4.6 in one day! All of my blood numbers (except platelets) were in the "normal" range. PICC line removed. Most of my restrictions have been lifted (still no sex, buffets, or sushi!), and my wife and I enjoyed a nice dinner out last night.
I've decided that three of the keys of a successful OUTPATIENT ASCT are
1. A great full time caregiver to stay on top of hygiene, diet, and meds
2. Trying to remain as physically active as possible (thanks Pouley!); and
3. A private living area where you can avoid people and germs.
I feel really blessed / fortunate that my transplant has gone this well so far. Hoping to avoid too many bumps in the road!
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Chad's Autologous Stem Cell Transplant Journal
Wow Chad! That is awesome news! So proud of you.
I'm so glad to hear this. I just told my husband that once the numbers start going up they may jump up over the days, that it may be a slow creep up but eventually they will start to move fast. We are hoping to be released on Day +14 and he's worried his numbers won't be where they need to be in order to go home. I told him let's just see what happens in the next couple of days.
So glad you and your wife were able to celebrate with a dinner out. Better times ahead!
I'm so glad to hear this. I just told my husband that once the numbers start going up they may jump up over the days, that it may be a slow creep up but eventually they will start to move fast. We are hoping to be released on Day +14 and he's worried his numbers won't be where they need to be in order to go home. I told him let's just see what happens in the next couple of days.
So glad you and your wife were able to celebrate with a dinner out. Better times ahead!
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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: Chad's Autologous Stem Cell Transplant Journal
Hi Chad,
That's excellent news! Having all your blood numbers, except platelets, in the normal range by Day +15 is impressive! Getting the PICC line removed is also a big milestone. So congratulations on a special day.
A couple other things in your post caught my eye. I was surprised that you were cleared so soon to eat anything you want except sushi and buffets. I also was surprised that your doctors were ok with you going out to eat in a public restaurant at Day +15.
In most cases I think it is recommended that the patient stay on a low microbial diet for 90-100 days after the SCT, and not go out in public where there are lots of other people nearby without wearing a mask for that long. I know those restrictions were in place for me after my SCT 3 years ago.
Perhaps your doctors lifted your restrictions extra early because your blood counts have come back so quickly. But, just to be safe, it might be good to double-check with your medical team to make sure they really meant for all of those restrictions to be removed so soon.
I just don't want to see you getting an infection after everything has gone so well for you so far.
Mike
That's excellent news! Having all your blood numbers, except platelets, in the normal range by Day +15 is impressive! Getting the PICC line removed is also a big milestone. So congratulations on a special day.
A couple other things in your post caught my eye. I was surprised that you were cleared so soon to eat anything you want except sushi and buffets. I also was surprised that your doctors were ok with you going out to eat in a public restaurant at Day +15.
In most cases I think it is recommended that the patient stay on a low microbial diet for 90-100 days after the SCT, and not go out in public where there are lots of other people nearby without wearing a mask for that long. I know those restrictions were in place for me after my SCT 3 years ago.
Perhaps your doctors lifted your restrictions extra early because your blood counts have come back so quickly. But, just to be safe, it might be good to double-check with your medical team to make sure they really meant for all of those restrictions to be removed so soon.
I just don't want to see you getting an infection after everything has gone so well for you so far.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Chad's Autologous Stem Cell Transplant Journal
Day +18
Mike, thanks for the reminder. I still have several dietary restrictions in place. But we found a nice quiet – mostly empty – restaurant to eat at, and they prepared my food to order!
Tara, sounds like your husband is on a pretty impressive course as well. Will be anxious to hear if he got released and how he's doing.
I'm still feeling remarkably well, all things considered. I still have pretty significant fatigue and some minor nausea, but well controlled with the meds. I'm eating about 60% of what I ate pre-transplant, so the appetite is coming back. The biggest blessing is that Diet Pepsi (which I think may have contributed to my getting multiple myeloma) doesn't really taste good to me anymore. I drink mostly water and apple juice now. Mayo Clinic cut down my visits from every day to twice a week at Day +15, which is nice.
I will meet with my myeloma specialist at Day +30 to see how the cancer itself is doing and plan any consolidation therapy. My understanding is that they do a bone marrow biopsy at Day +100 to really check the results of the transplant.
Prayers still going out to all the others also going through their transplants now: Dean, Barbara, Tara's hubby, and Ashwin.
Mike, thanks for the reminder. I still have several dietary restrictions in place. But we found a nice quiet – mostly empty – restaurant to eat at, and they prepared my food to order!
Tara, sounds like your husband is on a pretty impressive course as well. Will be anxious to hear if he got released and how he's doing.
I'm still feeling remarkably well, all things considered. I still have pretty significant fatigue and some minor nausea, but well controlled with the meds. I'm eating about 60% of what I ate pre-transplant, so the appetite is coming back. The biggest blessing is that Diet Pepsi (which I think may have contributed to my getting multiple myeloma) doesn't really taste good to me anymore. I drink mostly water and apple juice now. Mayo Clinic cut down my visits from every day to twice a week at Day +15, which is nice.
I will meet with my myeloma specialist at Day +30 to see how the cancer itself is doing and plan any consolidation therapy. My understanding is that they do a bone marrow biopsy at Day +100 to really check the results of the transplant.
Prayers still going out to all the others also going through their transplants now: Dean, Barbara, Tara's hubby, and Ashwin.
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Chad's Autologous Stem Cell Transplant Journal
Hi Chadsonw,
Great to hear that you are doing so well. Positive thoughts being sent your way that things continue as they've been going.
Mark
Great to hear that you are doing so well. Positive thoughts being sent your way that things continue as they've been going.
Mark
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Mark11
Re: Chad's Autologous Stem Cell Transplant Journal
Glad all is going well.
Keep us updated. Looking forward to your London black taxi tour ...
Regards,
Dean
Keep us updated. Looking forward to your London black taxi tour ...
Regards,
Dean
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
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