George,
Thanks for comparing notes. I am at the end of Day +9. I am also having issues with diarrhea. Not much fun and as an outpatient with a half hour drive to and from the transplant center daytime care facility, I had to think outside the box (or caboose). I am now becoming a fan of "Depends" (adult diapers). I don't want to get too graphic, but this diarrhea is very painful and feels like acid rain.
My WBC have been less than 0.1 for 3 days, although today they were reported as simply 0.1, if that means anything. I'll wait for a bigger return on that count. I will likely need a transfusion tomorrow as my platelets dropped to 22 today.
Still have my beard and hair such as it is, but I am not getting too attached to it. I haven't had any swallowing problems, but food is definitely starting to taste and smell bad to me.
Anyway, as an outpatient, I am now on daily visitation to the daycare for med's and bloodwork as I had a low grade fever a few days ago. Nothing has developed from it. They will test me for C.diff tomorrow.
I hope the diarrhea ends quickly for both of us.
Best of luck ahead George and all the others undertaking this same treatment right now. Someday in the hopefully not too distant future we will look back and say no worries it was well worth it.
Forums
-
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
Colin and Paul,
Tiredness seems to hang on. but at Day +12, it's much less. WBC has come up to 0.9. Platelets seem to be holding there own now. Diarrhea still an issue. May try Imodium (loperamide). I am an inpatient at City Of Hope. So being 200 miles from home, I will transfer to their Hope Village for a week or two. Then transfer home.
Tiredness seems to hang on. but at Day +12, it's much less. WBC has come up to 0.9. Platelets seem to be holding there own now. Diarrhea still an issue. May try Imodium (loperamide). I am an inpatient at City Of Hope. So being 200 miles from home, I will transfer to their Hope Village for a week or two. Then transfer home.
-
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
Well, my test results today were good, so we are expecting to press on with the melphalan tomorrow. I'm excited to get on with things, but also apprehensive about the side effects.
George and Colin, you guys are blazing the trail for me. Thanks so much for keeping me up to date on your progress, and best of luck to you both for a rapid recovery!
George and Colin, you guys are blazing the trail for me. Thanks so much for keeping me up to date on your progress, and best of luck to you both for a rapid recovery!
-
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
Paul and George,
It's Day +11 for me. Yesterday my WBC rose very slightly to 0.2. I also had a platelet transfusion as my platelets had dropped to 10. Oh and my hair is starting to fall out, and I am still battling with diarrhea. However, I am confident my numbers are going to pick up over the next few days. Other than the side effects described and expected, I think I have done well thus far. It is fortunate to have undertaken this procedure now when the weather is fairly warm and fewer colds or flus are going about. Still being very careful to avoid crowds and public areas.
Although foods don't taste as good right now, I have managed to take in meals and maintain my weight. Sushi rice is quite tolerable. I even ate a tortilla with rice and beans. The toughest part for me is feeling like a weak and tired patient and wondering when I can start to reclaim my quality of life.
It's Day +11 for me. Yesterday my WBC rose very slightly to 0.2. I also had a platelet transfusion as my platelets had dropped to 10. Oh and my hair is starting to fall out, and I am still battling with diarrhea. However, I am confident my numbers are going to pick up over the next few days. Other than the side effects described and expected, I think I have done well thus far. It is fortunate to have undertaken this procedure now when the weather is fairly warm and fewer colds or flus are going about. Still being very careful to avoid crowds and public areas.
Although foods don't taste as good right now, I have managed to take in meals and maintain my weight. Sushi rice is quite tolerable. I even ate a tortilla with rice and beans. The toughest part for me is feeling like a weak and tired patient and wondering when I can start to reclaim my quality of life.
-
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
Colin and Paul,
It's Day + 13. I was concerned that my WBC was slow coming back. I went from 2 days ago at 0.2, yesterday 0.9, and this morning 3.7. Platelets still low but not enough for another infusion.
As Colin said, food just doesn't taste that good, diarrhea is the biggest issue. Although it's controlled for several hours, it's still there. Hair started falling out today. They offered to shave it, so I will probably have that done today also.
Paul, if you feel sick at all, let the nurses know asap. The nurses here want to be told if my stomach is a little upset or I have nausea. it really helps
They also gave me a diet booklet if you have diarrhea. We have room service here with a menu, but you're on your own to order.
Best Of Luck
George
It's Day + 13. I was concerned that my WBC was slow coming back. I went from 2 days ago at 0.2, yesterday 0.9, and this morning 3.7. Platelets still low but not enough for another infusion.
As Colin said, food just doesn't taste that good, diarrhea is the biggest issue. Although it's controlled for several hours, it's still there. Hair started falling out today. They offered to shave it, so I will probably have that done today also.
Paul, if you feel sick at all, let the nurses know asap. The nurses here want to be told if my stomach is a little upset or I have nausea. it really helps
They also gave me a diet booklet if you have diarrhea. We have room service here with a menu, but you're on your own to order.
Best Of Luck
George
-
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
I finally have enough energy to get back on the net and give everyone an update on my progress.
On Day -2, or 2 days from Transplant (Day 0), I had my high-dose melphalan chemo treatment. The infusion process was relatively easy, but I had to chew ice for 4 hours to reduce the possibility of mouth sores. I never want to chew ice again!
We had a few gotcha's pop up today as well. We found out that since I am doing this outpatient, I will be on IV fluids (antibiotics and other fluids to prevent dehydration) round the clock until we know that the stem cells have engrafted after the transplant and I am able to drink at least 1.5 liters of fluid a day, so that is a new goal for me! This will probably take a couple of weeks, so until then I will be toting a little backpack with an IV pump and fluid bag around with me. I'm getting used to it, but it ticked me off that this wasn’t brought to my attention until today. Also, we will be having a medical service coming to the apartment weekly to deliver the fluids, lines, and other equipment.
Here is the current treatment schedule, assuming that things go according to plan and I don't get sick:
Day -2:
Melphalan infusion
Started 24 hr IV fluids
Started blood tests and Fast Track Clinic checkup appointments 2 to 3 times a week
Day -1:
Off day to allow the melphalan to finish doing its thing, then get out of my system. Started Levaquin (levofloxacin) and Diflucan (fluconazole).
Morning started out fine with a taco for breakfast, OJ, and coffee. About 10:30 started to get a queasy stomach so started the Zofran (ondansetron). One bout of diarrhea, resolved with one dose of Imodium. Tried crackers and toast, but neither sat well; threw up once. Didn’t eat or drink anything the rest of the all day.
Day 0 (Stem Cell Transplant):
Very weak and tired all day; slept most of the time up until the transplant. Still queasy, so no food and minimal liquids. During the transplant, just over 5 million stem cells were re-infused. The transplant doctor visited just as the transplant was starting. Mentioned the nausea issues and she recommended adding Compazine (prochlorperazine), alternating with the Zofran every 4 hours. Transplant wrapped up about 7, then we had to wait for home health to show up to train my wife (caregiver) on using and changing out the bags in my 24-hour pump. Fortunately, we DON’T need to have home health come every day.
Day 1:
Still weak and no appetite. Lucky to be able to stay awake for an hour or two at a time. Went to the hospital for blood work and a checkup with the APN. White blood cell count dropped not quite 50% from before the melphalan on Day -2, slight decrease in red blood cells and a small increase in platelets. Provided there aren’t any issues that crop up, I don’t have to return to the hospital until Day 4.
Day 2:
So, a lazy day hanging around the apartment near the hospital. Still no energy and little appetite. Managed to eat a bland breakfast taco, applesauce, and some cereal plus 12 oz of Gatorade. Temperature and blood pressure remain in normal ranges.
Day 3:
Seem to have a bit more energy today. My wife says I am “perkier”. She must be right, because I was on board with inviting our son and my mom to come up and visit today. We all masked for the visit, but it was great to have company. I actually asked for food today, so I’m somewhat encouraged. Know I haven’t reached bottom, but maybe can manage. Ate about the same as yesterday, but added more cereal with milk and some mashed potatoes. Blood work and a nurse visit at the hospital tomorrow.
Day 4:
I find myself here on Day 4. We were up at the transplant center this morning for my weekly CVC dressing change, a blood draw, and a consult. The blood test results are looking good:
WBC: From 4.3 to 0.9 K/uL
Hgb: From 12.7 to 12.6 gm/dL
Platelets: 187 to 152 K/uL
Day 5:
Start daily Neupogen treatments until engraftment. This will be a daily trip up to the transplant center since doing the shots ourselves would cost about $14000! Well worth a daily 10 minute drive!
Day 10 to 14:
Engraftment starts (fingers crossed!)
Neupogen injection ends
IV fluids finished
Day 25 to 30:
Test to re-stage my diagnosis
Discharge from Fast Track Clinic and start follow-up visits with myeloma doctor
Move back home from the apartment
On Day -2, or 2 days from Transplant (Day 0), I had my high-dose melphalan chemo treatment. The infusion process was relatively easy, but I had to chew ice for 4 hours to reduce the possibility of mouth sores. I never want to chew ice again!
We had a few gotcha's pop up today as well. We found out that since I am doing this outpatient, I will be on IV fluids (antibiotics and other fluids to prevent dehydration) round the clock until we know that the stem cells have engrafted after the transplant and I am able to drink at least 1.5 liters of fluid a day, so that is a new goal for me! This will probably take a couple of weeks, so until then I will be toting a little backpack with an IV pump and fluid bag around with me. I'm getting used to it, but it ticked me off that this wasn’t brought to my attention until today. Also, we will be having a medical service coming to the apartment weekly to deliver the fluids, lines, and other equipment.
Here is the current treatment schedule, assuming that things go according to plan and I don't get sick:
Day -2:
Melphalan infusion
Started 24 hr IV fluids
Started blood tests and Fast Track Clinic checkup appointments 2 to 3 times a week
Day -1:
Off day to allow the melphalan to finish doing its thing, then get out of my system. Started Levaquin (levofloxacin) and Diflucan (fluconazole).
Morning started out fine with a taco for breakfast, OJ, and coffee. About 10:30 started to get a queasy stomach so started the Zofran (ondansetron). One bout of diarrhea, resolved with one dose of Imodium. Tried crackers and toast, but neither sat well; threw up once. Didn’t eat or drink anything the rest of the all day.
Day 0 (Stem Cell Transplant):
Very weak and tired all day; slept most of the time up until the transplant. Still queasy, so no food and minimal liquids. During the transplant, just over 5 million stem cells were re-infused. The transplant doctor visited just as the transplant was starting. Mentioned the nausea issues and she recommended adding Compazine (prochlorperazine), alternating with the Zofran every 4 hours. Transplant wrapped up about 7, then we had to wait for home health to show up to train my wife (caregiver) on using and changing out the bags in my 24-hour pump. Fortunately, we DON’T need to have home health come every day.
Day 1:
Still weak and no appetite. Lucky to be able to stay awake for an hour or two at a time. Went to the hospital for blood work and a checkup with the APN. White blood cell count dropped not quite 50% from before the melphalan on Day -2, slight decrease in red blood cells and a small increase in platelets. Provided there aren’t any issues that crop up, I don’t have to return to the hospital until Day 4.
Day 2:
So, a lazy day hanging around the apartment near the hospital. Still no energy and little appetite. Managed to eat a bland breakfast taco, applesauce, and some cereal plus 12 oz of Gatorade. Temperature and blood pressure remain in normal ranges.
Day 3:
Seem to have a bit more energy today. My wife says I am “perkier”. She must be right, because I was on board with inviting our son and my mom to come up and visit today. We all masked for the visit, but it was great to have company. I actually asked for food today, so I’m somewhat encouraged. Know I haven’t reached bottom, but maybe can manage. Ate about the same as yesterday, but added more cereal with milk and some mashed potatoes. Blood work and a nurse visit at the hospital tomorrow.
Day 4:
I find myself here on Day 4. We were up at the transplant center this morning for my weekly CVC dressing change, a blood draw, and a consult. The blood test results are looking good:
WBC: From 4.3 to 0.9 K/uL
Hgb: From 12.7 to 12.6 gm/dL
Platelets: 187 to 152 K/uL
Day 5:
Start daily Neupogen treatments until engraftment. This will be a daily trip up to the transplant center since doing the shots ourselves would cost about $14000! Well worth a daily 10 minute drive!
Day 10 to 14:
Engraftment starts (fingers crossed!)
Neupogen injection ends
IV fluids finished
Day 25 to 30:
Test to re-stage my diagnosis
Discharge from Fast Track Clinic and start follow-up visits with myeloma doctor
Move back home from the apartment
-
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
Hello Paul.
Thanks for sharing your experiences so far. I was surprised that your outpatient experience involved so much additional self care undertaken in your home or residence. At the care facility where I have been attended to, they look after all hydration, antibiotics, and the like, and require patients to come in every second day at a minimum. In my case, a mild fever prompted a change to daily visits and daily antibiotic. Sessions last about 2 1/2 hrs.
Yesterday was Day +17 for me and my numbers finally came up high enough that I will be taken off the antibiotics and they will soon remove my Hickman line. Currently have white blood cell count of 1.4 and a neutrophil count of 0.5.
Things are going pretty well. I feel much better and my appetite is improved. Looks like I may even get to travel back to my home on Vancouver Island by this weekend if things keep improving. I was not given any Neupogen injections, post transplant, which is probably why my numbers took a little longer to come back, but I have no regrets. I was very fortunate not to have vomited or gotten sick (touch wood) through the whole process to date. Day +6 through Day +11 were the worst part for me, and looking back even those days were tolerable.
The real test of course is the effect all this will have on my myeloma and that I am trying not to think too much on at this point. I have a meeting with my hematologist at the end of the month.
Good luck to you Paul and to George and look forward to hearing from you in the future.
Thanks for sharing your experiences so far. I was surprised that your outpatient experience involved so much additional self care undertaken in your home or residence. At the care facility where I have been attended to, they look after all hydration, antibiotics, and the like, and require patients to come in every second day at a minimum. In my case, a mild fever prompted a change to daily visits and daily antibiotic. Sessions last about 2 1/2 hrs.
Yesterday was Day +17 for me and my numbers finally came up high enough that I will be taken off the antibiotics and they will soon remove my Hickman line. Currently have white blood cell count of 1.4 and a neutrophil count of 0.5.
Things are going pretty well. I feel much better and my appetite is improved. Looks like I may even get to travel back to my home on Vancouver Island by this weekend if things keep improving. I was not given any Neupogen injections, post transplant, which is probably why my numbers took a little longer to come back, but I have no regrets. I was very fortunate not to have vomited or gotten sick (touch wood) through the whole process to date. Day +6 through Day +11 were the worst part for me, and looking back even those days were tolerable.
The real test of course is the effect all this will have on my myeloma and that I am trying not to think too much on at this point. I have a meeting with my hematologist at the end of the month.
Good luck to you Paul and to George and look forward to hearing from you in the future.
-
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
Colin And Paul,
I am at Day +19. I was an inpatient, so my discharge was Day +16. Glad to leave the hospital just to be outside. Diarrhea was my biggest issue. Basically its not as bad now, and bowel movements are getting towards normal. Still use some medications for diarrhea as needed. Tiredness still hanging on but not as bad. Walking a lot. almost a mile two days ago. Slow mile!
Just had my line removed at Day +18. My doctor has gone over my medications. One of them will be for a year. It covers infections. I made a chart for all my drugs so I can mark the time I take them and know when to take them again. We're currently staying in what's called the Village near my transplant center, so my doctor and lab draws are within walking distance. One more week and we will be going home.
WBC 4.6
Platelets 77.
I am only giving my input on my recovery so possibly it helps you guys in what to expect.
Best of Luck, George
I am at Day +19. I was an inpatient, so my discharge was Day +16. Glad to leave the hospital just to be outside. Diarrhea was my biggest issue. Basically its not as bad now, and bowel movements are getting towards normal. Still use some medications for diarrhea as needed. Tiredness still hanging on but not as bad. Walking a lot. almost a mile two days ago. Slow mile!
Just had my line removed at Day +18. My doctor has gone over my medications. One of them will be for a year. It covers infections. I made a chart for all my drugs so I can mark the time I take them and know when to take them again. We're currently staying in what's called the Village near my transplant center, so my doctor and lab draws are within walking distance. One more week and we will be going home.
WBC 4.6
Platelets 77.
I am only giving my input on my recovery so possibly it helps you guys in what to expect.
Best of Luck, George
-
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
Hi Everyone,
I'm Joy, Paul's wife and caregiver, posting on his behalf today. Fatigue has hit him pretty hard the last few days, and he hasn't felt up to posting.
Day +5:
Started Neupogen injections and continued on IV fluids through the backpack pump. Stayed up (and awake!) most of the day, but crashed around 7:30 p.m., so missed watching fireworks. Drank more than a liter of fluids in addition to what he is getting through the pump.
Day +6:
Blood draw, nurse visit and Neupogen. WBC count is reaching nadir, but platelets and RBC are still relatively good. Much more tired today. Paul may have pushed harder than he should have yesterday. Appetite is low, but food still tastes OK and continuing to hydrate as much as he can. Paul really wants to get rid of the pump backpack - needs to be able to drink 1.5-2 liters a day, consistently, before he'll be released from it.
WBC: From 0.9 to 0.2 K/uL
Hgb: From 12.6 to 12.3 gm/dL
Platelets: From 152 to 75 K/uL
Day +7:
Quick trip to the hospital for the Neupogen injection, then back to the apartment to crash - and I do mean crash. Slept a bare minimum of 16 hours today. Energy is the lowest to date. Had a low grade fever (99-99.6 F, or 37.2-37.6 C) most of the day, but nothing that necessitated a trip to the ER.
Day +8:
Blood draw, nurse visit and Neupogen. WBC remains at 0.2 and RBC is still good, but platelets dropped below 20, so it was time to get a platelet transfusion. That should get him through the weekend, but we do need to watch for fever and any other signs of infection. We will go to the hospital Saturday and Sunday for Neupogen, but nothing else (knock wood!).
WBC: Steady at 0.2 K/uL
Hgb: From 12.3 to 11.6 gm/dL
Platelets: From 75 to 19 K/uL
If you've been following Paul's story, you know he has bad veins and is a "hard stick". He's got a two lumen port, but the last few blood draws have been done through (his one good!) vein since he's attached to that darn pump 24/7. Because the fluids being delivered include potassium and magnesium, it was explained that they couldn't use the other lumen for the draw because it might affect the test results. Needless to say, that poor vein is in pretty bad shape.
Paul asked me to call and find out if we disconnected the pump before the next draw if they could use the port for it. Well, bless their hearts, turns out that as long as we stop the pump (don't even have to disconnect) and have them draw a "throw away" vial before the actual draw for testing, results should be just fine. I immediately asked for that to be added into his chart and a prescription be written to draw from the lumen instead of the vein. Amazing what you learn when you ask the right questions!
I'm Joy, Paul's wife and caregiver, posting on his behalf today. Fatigue has hit him pretty hard the last few days, and he hasn't felt up to posting.
Day +5:
Started Neupogen injections and continued on IV fluids through the backpack pump. Stayed up (and awake!) most of the day, but crashed around 7:30 p.m., so missed watching fireworks. Drank more than a liter of fluids in addition to what he is getting through the pump.
Day +6:
Blood draw, nurse visit and Neupogen. WBC count is reaching nadir, but platelets and RBC are still relatively good. Much more tired today. Paul may have pushed harder than he should have yesterday. Appetite is low, but food still tastes OK and continuing to hydrate as much as he can. Paul really wants to get rid of the pump backpack - needs to be able to drink 1.5-2 liters a day, consistently, before he'll be released from it.
WBC: From 0.9 to 0.2 K/uL
Hgb: From 12.6 to 12.3 gm/dL
Platelets: From 152 to 75 K/uL
Day +7:
Quick trip to the hospital for the Neupogen injection, then back to the apartment to crash - and I do mean crash. Slept a bare minimum of 16 hours today. Energy is the lowest to date. Had a low grade fever (99-99.6 F, or 37.2-37.6 C) most of the day, but nothing that necessitated a trip to the ER.
Day +8:
Blood draw, nurse visit and Neupogen. WBC remains at 0.2 and RBC is still good, but platelets dropped below 20, so it was time to get a platelet transfusion. That should get him through the weekend, but we do need to watch for fever and any other signs of infection. We will go to the hospital Saturday and Sunday for Neupogen, but nothing else (knock wood!).
WBC: Steady at 0.2 K/uL
Hgb: From 12.3 to 11.6 gm/dL
Platelets: From 75 to 19 K/uL
If you've been following Paul's story, you know he has bad veins and is a "hard stick". He's got a two lumen port, but the last few blood draws have been done through (his one good!) vein since he's attached to that darn pump 24/7. Because the fluids being delivered include potassium and magnesium, it was explained that they couldn't use the other lumen for the draw because it might affect the test results. Needless to say, that poor vein is in pretty bad shape.
Paul asked me to call and find out if we disconnected the pump before the next draw if they could use the port for it. Well, bless their hearts, turns out that as long as we stop the pump (don't even have to disconnect) and have them draw a "throw away" vial before the actual draw for testing, results should be just fine. I immediately asked for that to be added into his chart and a prescription be written to draw from the lumen instead of the vein. Amazing what you learn when you ask the right questions!
-
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,
I have been following Paul's treatment very closely. He and my husband had their "birthdays" on the same day. Today is Day +9 for him as well. It is amazing how closely their course has ran. My husband's ANC and platelets dropped on the same day as well. Today was also his first day of receiving platelets.
My husband is an inpatient, but oh how he wishes it was an outpatient experience. He can't stand being cooped up like he is. Generally he has had very little problems except some small fatigue and low grade nausea until yesterday. Everything seemed to hit him very hard on the night of Day +8. Everything seemed to hit him at once: nausea, fatigue, diarrhea, and extreme bone pain, which we are assuming is from the Neupogen. He also has developed an oral fungal infection.
Hopefully everything is still going smooth for Paul. We wish him a fast recovery and look forward to reading his progress!
I have been following Paul's treatment very closely. He and my husband had their "birthdays" on the same day. Today is Day +9 for him as well. It is amazing how closely their course has ran. My husband's ANC and platelets dropped on the same day as well. Today was also his first day of receiving platelets.
My husband is an inpatient, but oh how he wishes it was an outpatient experience. He can't stand being cooped up like he is. Generally he has had very little problems except some small fatigue and low grade nausea until yesterday. Everything seemed to hit him very hard on the night of Day +8. Everything seemed to hit him at once: nausea, fatigue, diarrhea, and extreme bone pain, which we are assuming is from the Neupogen. He also has developed an oral fungal infection.
Hopefully everything is still going smooth for Paul. We wish him a fast recovery and look forward to reading his progress!
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