Hi Mrswrench -
Happy belated birthday to your husband!
While there is some additional work caring for an outpatient, I wouldn't trade it for anything. Paul is so much more comfortable outside the hospital setting, it is worth any hassle!
Day +8 (addendum):
Had a bit of a scare with temperature about 8 p.m. Forgot to take it before Paul went in for his bath, and afterward temp was 100.4 F (38 C), just below the 100.5 F go-to-the-emergency-room threshold. However, taking temp every 10 minutes for the next hour showed a decline to 99.5 F (37.5 C), at which point I was comfortable enough to let him go to bed and just take one more reading before I went to bed (when temp was 99.1 F).
Day +9
Quick trip to the hospital for Neupogen, then back to the apartment. Paul had a bit more energy and appetite today, even spent some time watching movies – something he hasn't had the attention span for the last few days. As has become the daily pattern, he started running a low grade (99.0-99.5 F) fever around 2 p.m. This lasts until about 8 p.m. when the temp drops below 99 F. While he was cleaning up before bed, he notice some hair in the tub.
Day +10
Another trip to the hospital for Neupogen this morning. Once we got back to the apartment, I got to play barber. There was more hair on the pillow this morning, so Paul wanted to go shorter, although not get rid of everything. So far today appetite and energy seem good, so I'm assuming the platelets he got on Friday are doing their job. We continue to be blessed that Paul has not had any major nausea or diarrhea. Medications have kept those side effects to a minimum.
It will be interesting to see what the numbers are tomorrow. Hoping to see an uptick in values, but realistically expecting the counts to be about the same as Friday.
Enjoy the rest of your weekend, everyone!
Forums
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jjudas - Name: Joy J.
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: 12/28/2016
- Age at diagnosis: 51
Re: Paul J's initial treatment & stem cell transplant story
Joy,
Glad to hear he's not having any major issues! Our doctor told us that if it is not from an infection; rather,a fever is a good sign that engraftment has begun, so hopefully when you get your numbers tomorrow, he will be on the uptick.
My husband hasn't had a hint of a fever yet, but his numbers have mirrored Paul's every day you've posted, so we are hoping his numbers are up tomorrow also.
No hair loss here yet. We are thinking that maybe not everyone loses their hai,r and perhaps my husband's will be spared.
Best of luck in the upcoming days
Glad to hear he's not having any major issues! Our doctor told us that if it is not from an infection; rather,a fever is a good sign that engraftment has begun, so hopefully when you get your numbers tomorrow, he will be on the uptick.
My husband hasn't had a hint of a fever yet, but his numbers have mirrored Paul's every day you've posted, so we are hoping his numbers are up tomorrow also.
No hair loss here yet. We are thinking that maybe not everyone loses their hai,r and perhaps my husband's will be spared.
Best of luck in the upcoming days
Re: Paul J's initial treatment & stem cell transplant story
Joy/Paul and Colin,
I sure hope this finds you both getting through the transplant. I am at Day+26. Still don't have my old appetite, but eating small things throughout the day works better than 3 big meals.
Day 5 thru 12 were worse for me. Being an inpatient, they wanted me to walk laps, but due to diarrhea issues I just walked close to my room. There were days where I just lay in bed. No nausea issues. But they had medication for that if I felt a little queasy. I lost about 10 pounds, which puts me right at my normal weight of 168. I will start riding my cycling trainer when I get home. Exercise really helps through all this.
Only 3 more days at the cottages near the hospital and I can go home; 33 days away from home. But being 200 miles one way from the transplant center, I decided to stay near the hospital and get my first 4 appointments after discharge completed.
Now my oncologist at home will take over most of my appointments. Still have to come back to City Of Hope once per month.
Best of luck to both of you, it's a slow recovery but you will get there; stay positive.
George
I sure hope this finds you both getting through the transplant. I am at Day+26. Still don't have my old appetite, but eating small things throughout the day works better than 3 big meals.
Day 5 thru 12 were worse for me. Being an inpatient, they wanted me to walk laps, but due to diarrhea issues I just walked close to my room. There were days where I just lay in bed. No nausea issues. But they had medication for that if I felt a little queasy. I lost about 10 pounds, which puts me right at my normal weight of 168. I will start riding my cycling trainer when I get home. Exercise really helps through all this.
Only 3 more days at the cottages near the hospital and I can go home; 33 days away from home. But being 200 miles one way from the transplant center, I decided to stay near the hospital and get my first 4 appointments after discharge completed.
Now my oncologist at home will take over most of my appointments. Still have to come back to City Of Hope once per month.
Best of luck to both of you, it's a slow recovery but you will get there; stay positive.
George
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Paul J's initial treatment & stem cell transplant story
We got awesome news at Paul's appointment this morning – engraftment has begun!
Day +11:
WBC: From 0.2 to 3.4 K/uL
Hgb: From 11.6 to 10.6 gm/dL
Platelets: From 19 to 18 K/uL
Based on these numbers, Paul can come off the antiviral and anti-fungal medications, and doesn't need Neupogen today. We are waiting on the absolute neutrophil count to find out if we need to go in for a shot tomorrow. Best news, however, is that he can stop using the pump! Since he's been drinking a liter to liter and a half on his own daily, he no longer needs the additional fluids through the pump. He is on cloud 9!
We're hoping that the CVC line can come out later this week.
Energy is close to normal levels and I feel like I'm having to rein him in a bit to make sure he doesn't over exert. His appetite is still good. We may be able to head for home sometime next week.
George – happy to hear you will be able to return home soon. We're definitely looking forward to getting back into our own bed!
Day +11:
WBC: From 0.2 to 3.4 K/uL
Hgb: From 11.6 to 10.6 gm/dL
Platelets: From 19 to 18 K/uL
Based on these numbers, Paul can come off the antiviral and anti-fungal medications, and doesn't need Neupogen today. We are waiting on the absolute neutrophil count to find out if we need to go in for a shot tomorrow. Best news, however, is that he can stop using the pump! Since he's been drinking a liter to liter and a half on his own daily, he no longer needs the additional fluids through the pump. He is on cloud 9!
We're hoping that the CVC line can come out later this week.Energy is close to normal levels and I feel like I'm having to rein him in a bit to make sure he doesn't over exert. His appetite is still good. We may be able to head for home sometime next week.
George – happy to hear you will be able to return home soon. We're definitely looking forward to getting back into our own bed!
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jjudas - Name: Joy J.
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: 12/28/2016
- Age at diagnosis: 51
Re: Paul J's initial treatment & stem cell transplant story
Hi Paul/Joy and George.
Glad to hear of your respective treatment progression.. I was released from outpatient care yesterday (Day+24) with my counts well on there way up. The Hickman line was easily removed with little fuss and no pain. We took the ferry back to our home on Vancouver Island shortly afterwards. It was wonderful to arrive back home. We were gone from home for a total of 6 weeks.
I was given a requisition for weekly blood work and must return to Vancouver to visit my hematologist on July 27.
Overall, I believe I came through the process quite well with few lingering effects. I still can't recognize the bald and clean shaven face in the mirror, but I'll get over that, eventually.
Hope each of you get to return home soon. Best wishes.
Colin.
Glad to hear of your respective treatment progression.. I was released from outpatient care yesterday (Day+24) with my counts well on there way up. The Hickman line was easily removed with little fuss and no pain. We took the ferry back to our home on Vancouver Island shortly afterwards. It was wonderful to arrive back home. We were gone from home for a total of 6 weeks.
I was given a requisition for weekly blood work and must return to Vancouver to visit my hematologist on July 27.
Overall, I believe I came through the process quite well with few lingering effects. I still can't recognize the bald and clean shaven face in the mirror, but I'll get over that, eventually.
Hope each of you get to return home soon. Best wishes.
Colin.
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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: Paul J's initial treatment & stem cell transplant story
Congratulations on all of your progression and for Paul's kick engraftment! That is an amazing jump from 0.2 to 3.4 in one day!
We are on Day +13. Total WBC's jumped from 0.1 to 0.5 today but the ANC is only 0.1 so my husband is still trapped in what he feels is the "Hotel California." Hopefully in the next couple of days he will get to move to outpatient. We live 200 miles away from the hospital so it would be hotel living but at least he would have some freedom and could walk somewhere besides the hallway.
Hair loss started yesterday and platelets are needed again today but he is finally overcoming his nausea. He has lost 20 lbs so far but finally feels like eating today.
Best of luck to you all in the outside world!
We are on Day +13. Total WBC's jumped from 0.1 to 0.5 today but the ANC is only 0.1 so my husband is still trapped in what he feels is the "Hotel California." Hopefully in the next couple of days he will get to move to outpatient. We live 200 miles away from the hospital so it would be hotel living but at least he would have some freedom and could walk somewhere besides the hallway.
Hair loss started yesterday and platelets are needed again today but he is finally overcoming his nausea. He has lost 20 lbs so far but finally feels like eating today.
Best of luck to you all in the outside world!
Re: Paul J's initial treatment & stem cell transplant story
Here is a brief Day +13 update based on my blood test this morning. My white blood cell count is continuing to improve even without the Neupogen shots, going from 3.4 on Monday to 4.7 today, actually in the normal range! I am sure that putting me on daily Neupogen shots after the transplant had a lot to do with this but I was taken off of Neupogen on Monday and the WBC counts continued to improve, which is a great sign.
The doctor told us this morning that all of my other test results looked good. Platelet count jumped from 18 to 42, RBC is 3.16, Hgb is 10.2, and neutrophils went from 46% to 66%. If I had been doing this as an in-patient, the doctor said that with these numbers they would have released me today.
My energy level is way up this week, I don’t have any nausea or bone pain any more, and so far my taste buds have survived intact. Only one thing on the negative side – my hair started falling out over the weekend. We’ve shaved the rest of it off. I’m still getting used to it, but if this is the worst side effect, I’ll take it!
Paul
The doctor told us this morning that all of my other test results looked good. Platelet count jumped from 18 to 42, RBC is 3.16, Hgb is 10.2, and neutrophils went from 46% to 66%. If I had been doing this as an in-patient, the doctor said that with these numbers they would have released me today.
My energy level is way up this week, I don’t have any nausea or bone pain any more, and so far my taste buds have survived intact. Only one thing on the negative side – my hair started falling out over the weekend. We’ve shaved the rest of it off. I’m still getting used to it, but if this is the worst side effect, I’ll take it!
Paul
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul J's initial treatment & stem cell transplant story
Day +18 Update:
My test results on Friday, Day +15, were promising enough that the doctor ordered removal of my CVC line (which was so easy!) and I got a ‘weekend pass’ to go down to our house in League City to spend time with our son, my mom, and our puppies. I was still tired and napped on the couch most of the time, but it was so nice to be home!
I have blood tests and consultations on Tuesday and Friday this week, and it sounds like we will be re-staging on Friday.
Fingers crossed!
My test results on Friday, Day +15, were promising enough that the doctor ordered removal of my CVC line (which was so easy!) and I got a ‘weekend pass’ to go down to our house in League City to spend time with our son, my mom, and our puppies. I was still tired and napped on the couch most of the time, but it was so nice to be home!
I have blood tests and consultations on Tuesday and Friday this week, and it sounds like we will be re-staging on Friday.
Fingers crossed!
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul J's initial treatment & stem cell transplant story
That's great news, Paul. Congratulations, and good luck with your continuing recovery from the transplant,
Re: Paul J's initial treatment & stem cell transplant story
Day +20 Update:
Another blood test and doctor consultation on Day +19. Numbers continue to look good:
WBC: 3.9
RBC: 3.67
Hgb: 11.8
Platelet: 175
The doctor told us today that we can be at home starting today instead of being in the apartment near the hospital! We were hoping to hear this at the Friday consultation, but it was a big surprise to hear this yesterday.
One thing that we need to be watchful about is overdoing it. I have been monitoring my step count on my Fitbit throughout the transplant, and as of last week I was back up to 3000 steps, or about 1.7 miles (2.7 km) per day, and was able to sustain this with no noticeable impact to my fatigue level. When we got the 'weekend pass' to be home last weekend, I went over 5000 steps on Friday as we packed up some things at the apartment and puttered around the house Friday evening. I ended up on the couch most of the weekend, I think because of overdoing it on Friday. I am monitoring things closer now and taking care not to overdo it.
One complication: My wife / caregiver went for a walk last night around the neighborhood, took a bad step, and twisted her knee badly. She went to a local emergency treatment facility this morning to have it looked at and nothing is broken but she is having to use crutches to walk now. This will complicate things with my hospital visits. We will have to come up with some alternate plans for the near future.
Another blood test and doctor consultation on Day +19. Numbers continue to look good:
WBC: 3.9
RBC: 3.67
Hgb: 11.8
Platelet: 175
The doctor told us today that we can be at home starting today instead of being in the apartment near the hospital! We were hoping to hear this at the Friday consultation, but it was a big surprise to hear this yesterday.
One thing that we need to be watchful about is overdoing it. I have been monitoring my step count on my Fitbit throughout the transplant, and as of last week I was back up to 3000 steps, or about 1.7 miles (2.7 km) per day, and was able to sustain this with no noticeable impact to my fatigue level. When we got the 'weekend pass' to be home last weekend, I went over 5000 steps on Friday as we packed up some things at the apartment and puttered around the house Friday evening. I ended up on the couch most of the weekend, I think because of overdoing it on Friday. I am monitoring things closer now and taking care not to overdo it.
One complication: My wife / caregiver went for a walk last night around the neighborhood, took a bad step, and twisted her knee badly. She went to a local emergency treatment facility this morning to have it looked at and nothing is broken but she is having to use crutches to walk now. This will complicate things with my hospital visits. We will have to come up with some alternate plans for the near future.
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
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