Good luck Doug ... Looking forward to your posts about your experience and wish you well on this part of the journey.
Good luck to you as well!
Forums
Re: Doug's stem cell transplant journey has begun
GoDucks wrote:
Good luck to you as well!
Good luck to you as well!
-
Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Doug's stem cell transplant journey has begun
Day 1 underway, after a tough night following the stem cell transplant yesterday. Between the transplant, the earlier chemotherapy and all the preventative medicines, my body felt like there was a riot going on inside. Not really bad, but I did have to take some nausea tablets to keep the party manageable.
The creamed corn odor stuck around overnight so my body is still processing the preservative for the stored stem cells. Not bad for me but not so nice for my wife to deal with.
My doctor told me the worst is yet to come as far as nausea and ill feelings, with this weekend being the worst in his guesstimate. I'm just a passenger in this train so all I can do is eat and drink as much as I can and ride until the engraftment is complete and the restart process begins to normalize. I am turning into pro nap guy so with any luck I will sleep through much of the next week, reducing my pity party time!
The creamed corn odor stuck around overnight so my body is still processing the preservative for the stored stem cells. Not bad for me but not so nice for my wife to deal with.
My doctor told me the worst is yet to come as far as nausea and ill feelings, with this weekend being the worst in his guesstimate. I'm just a passenger in this train so all I can do is eat and drink as much as I can and ride until the engraftment is complete and the restart process begins to normalize. I am turning into pro nap guy so with any luck I will sleep through much of the next week, reducing my pity party time!
-
Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Doug's stem cell transplant journey has begun
Day +4
Wow, simply wow. Day +2 began with vomiting and no ability to eat, which continued through Day +3. Pain was manageable, with pain from both the chemo attacking the tumors in my chest and the bone pain from the active stem cells.
Don't even think about brushing my teeth, just putting my toothbrush in my mouth results in gagging and vomiting.
Weakness came in strong today, Day +4, and I managed to consume 2 Ensure bottles this morning and afternoon. One bit of advice, the chocolate flavor is more likely to result in heartburn, at least in my case.
A few more days of travail and hopefully things will start to get better. This is definitely where knowing what others have gone through matters, going through this alone would be a soul crusher.
Wow, simply wow. Day +2 began with vomiting and no ability to eat, which continued through Day +3. Pain was manageable, with pain from both the chemo attacking the tumors in my chest and the bone pain from the active stem cells.
Don't even think about brushing my teeth, just putting my toothbrush in my mouth results in gagging and vomiting.
Weakness came in strong today, Day +4, and I managed to consume 2 Ensure bottles this morning and afternoon. One bit of advice, the chocolate flavor is more likely to result in heartburn, at least in my case.
A few more days of travail and hopefully things will start to get better. This is definitely where knowing what others have gone through matters, going through this alone would be a soul crusher.
-
Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Doug's stem cell transplant journey has begun
Day +5
Today has been both better and worse. Better in that my stomach can handle solid food like oatmeal and baked potato, but worse due to my nausea not being controlled by either of the medicines prescribed for that.
Tomorrow I will pick up a new prescription for an alternate medicine for nausea. Hopefully that will help ease the discomfort.
Today has been both better and worse. Better in that my stomach can handle solid food like oatmeal and baked potato, but worse due to my nausea not being controlled by either of the medicines prescribed for that.
Tomorrow I will pick up a new prescription for an alternate medicine for nausea. Hopefully that will help ease the discomfort.
-
Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Doug's stem cell transplant journey has begun
Hi Doug,
Sorry to hear about the tough time you've had the past few days. As you've already noted, though, you're basically in what is usually the worst stretch of the transplant process. Things should start getting better soon.
Good luck with your recovery, and thanks for sharing your experience with all of us here in the forum.
Sorry to hear about the tough time you've had the past few days. As you've already noted, though, you're basically in what is usually the worst stretch of the transplant process. Things should start getting better soon.
Good luck with your recovery, and thanks for sharing your experience with all of us here in the forum.
-
Jonah
Re: Doug's stem cell transplant journey has begun
Day +8
Out of the Dismal Pit finally, beginning yesterday. My chemo brain eased and my appetite allowed me to actually recover a pound from the losses over the previous week. Today has been better as well; nowhere near normal, but a lot better than before.
My numbers are hitting bottom tomorrow based on the trend over the last week. White blood cells have been at 0.1 since yesterday, and my platelet count went from 20 to 13 over the last 2 days. I'll probably get a platelet transfusion tomorrow. Considering that I have been a blood donor since the 1980s, it will interesting to be on the receiving end this time.
I've been running a low grade fever, below the emergency room threshold, for two days now, so the engrafting process seems to be working as well. My doctor is saying my own system should start making blood products as soon as this weekend, but certainly by the end of next week. It will be nice to go from the severe immune system weakness to a stronger system. The stress over my catching an infection is always around these days.
Out of the Dismal Pit finally, beginning yesterday. My chemo brain eased and my appetite allowed me to actually recover a pound from the losses over the previous week. Today has been better as well; nowhere near normal, but a lot better than before.
My numbers are hitting bottom tomorrow based on the trend over the last week. White blood cells have been at 0.1 since yesterday, and my platelet count went from 20 to 13 over the last 2 days. I'll probably get a platelet transfusion tomorrow. Considering that I have been a blood donor since the 1980s, it will interesting to be on the receiving end this time.
I've been running a low grade fever, below the emergency room threshold, for two days now, so the engrafting process seems to be working as well. My doctor is saying my own system should start making blood products as soon as this weekend, but certainly by the end of next week. It will be nice to go from the severe immune system weakness to a stronger system. The stress over my catching an infection is always around these days.
-
Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Doug's stem cell transplant journey has begun
Day +9
I am continuing to gain more appetite and feel better every day now. My platelet count dropped to 9, so I received a platelet transfusion this afternoon, a first for me. The only time I've seen platelets before was when I donated them for leukemia patients in the 1980s.
My white blood cell count is still less than 0.1, but should begin its rise in the next day or so.
Overall, the bad days seem to be ended and the relatively better recovery days have started. I am eating a full meal today for the first time since day 0, albeit in very small portions. I even have a "taco night" planned, without the spicy stuff I love, but close enough for now!
I am continuing to gain more appetite and feel better every day now. My platelet count dropped to 9, so I received a platelet transfusion this afternoon, a first for me. The only time I've seen platelets before was when I donated them for leukemia patients in the 1980s.
My white blood cell count is still less than 0.1, but should begin its rise in the next day or so.
Overall, the bad days seem to be ended and the relatively better recovery days have started. I am eating a full meal today for the first time since day 0, albeit in very small portions. I even have a "taco night" planned, without the spicy stuff I love, but close enough for now!
-
Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Doug's stem cell transplant journey has begun
Hang in there Doug. I'm hoping your appetite stays strong.
-
Eileenk - Name: Eileen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Smoldering, September 2017
- Age at diagnosis: 49
Re: Doug's stem cell transplant journey has begun
Day +12
The last few days have been a roller coaster, but recovery is definite now. My white blood cell number finally rose from 0.1 yesterday when it rose to 0.2 and today it was at 0.4. All the other factors are going up as well, and my skin tone and color are now looking more normal. My appetite has grown too. Today I ate 3 complete meals without most of the rumbling stomach that has been present since the final chemotherapy treatments..
The difficult part was the communication between the current doctor and myself. Two nights ago we discovered that neither of the two thermometers provided by the hospital that I am receiving my care from were accurate. One was wildly inaccurate, the other more consistent but about 1 degree high. I told the doctor about that problem and showed him the readings, thinking they would want to know that information.
The doctor after that decided that the malfunctioning thermometers meant I might have had a temperature indicating an infection. He had the nurse collect urine and blood culture samples and prescribed a powerful antibiotic. That decision was not even communicated to me. They simply walked in, connected the IV, and prescribed more for us to inject at home via the line in my chest.
This did not sit well with me or my wife. There was no reason to assume an infection was present and there was enough good temperature recordings to show it was unlikely. The antibiotic was very strong and conflicted with already prescribed medicines, but that was not communicated to us before we were released. Finally, the antibiotic was so strong I could not stay awake minutes after receiving an injection, and when I did awaken, I could not eat until hours later. It also made me so dizzy I had to wall walk everywhere never taking my hands off some supporting structure as I moved.
Today I went and told the doctor that I couldn't continue the antibiotic due to the side effects. My doctor wasn't happy, but by then the culture results were in my record, all showing no evidence of infection. His nurse practitioner tried to prescribe an alternate antibiotic, again without communicating with me or my wife. We only found that minutes before the doctor came into my room, so I asked what evidence the decision was based on, and he did not have an answer. Given the results of my cultures, a two day streak of normal temps, and no other signs of infection, I rejected that prescription as well.
Tonight I am feeling better, eating well, even had a second serving of beef! It appears that my recovery is ongoing and I'll be released on time or earlier. Hopefully the relationship between the the doctors and us hasn't been damaged too badly. A new team comes in tomorrow, so I may not know until the current team returns next week.
One final note, my hair is finally departing from my head. I shaved my head before coming here, so my loss is the stubble left over. Not a big deal for me, but it may be for some.
The last few days have been a roller coaster, but recovery is definite now. My white blood cell number finally rose from 0.1 yesterday when it rose to 0.2 and today it was at 0.4. All the other factors are going up as well, and my skin tone and color are now looking more normal. My appetite has grown too. Today I ate 3 complete meals without most of the rumbling stomach that has been present since the final chemotherapy treatments..
The difficult part was the communication between the current doctor and myself. Two nights ago we discovered that neither of the two thermometers provided by the hospital that I am receiving my care from were accurate. One was wildly inaccurate, the other more consistent but about 1 degree high. I told the doctor about that problem and showed him the readings, thinking they would want to know that information.
The doctor after that decided that the malfunctioning thermometers meant I might have had a temperature indicating an infection. He had the nurse collect urine and blood culture samples and prescribed a powerful antibiotic. That decision was not even communicated to me. They simply walked in, connected the IV, and prescribed more for us to inject at home via the line in my chest.
This did not sit well with me or my wife. There was no reason to assume an infection was present and there was enough good temperature recordings to show it was unlikely. The antibiotic was very strong and conflicted with already prescribed medicines, but that was not communicated to us before we were released. Finally, the antibiotic was so strong I could not stay awake minutes after receiving an injection, and when I did awaken, I could not eat until hours later. It also made me so dizzy I had to wall walk everywhere never taking my hands off some supporting structure as I moved.
Today I went and told the doctor that I couldn't continue the antibiotic due to the side effects. My doctor wasn't happy, but by then the culture results were in my record, all showing no evidence of infection. His nurse practitioner tried to prescribe an alternate antibiotic, again without communicating with me or my wife. We only found that minutes before the doctor came into my room, so I asked what evidence the decision was based on, and he did not have an answer. Given the results of my cultures, a two day streak of normal temps, and no other signs of infection, I rejected that prescription as well.
Tonight I am feeling better, eating well, even had a second serving of beef! It appears that my recovery is ongoing and I'll be released on time or earlier. Hopefully the relationship between the the doctors and us hasn't been damaged too badly. A new team comes in tomorrow, so I may not know until the current team returns next week.
One final note, my hair is finally departing from my head. I shaved my head before coming here, so my loss is the stubble left over. Not a big deal for me, but it may be for some.
-
Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Doug's stem cell transplant journey has begun
Thank you for sharing your updates, Doug! I hope things continue to improve for you!
Doug
Doug
-
dbsmithiii - Name: Doug
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 15, 2017
- Age at diagnosis: 50
27 posts
• Page 2 of 3 • 1, 2, 3
Return to Treatments & Side Effects