I am worried about nausea and other stomach issues the most for him as far as normal issues in the recovery phase go and keeping my fingers crossed he has no unforeseen complications in the process.
Keep posting....
Forums
Re: Debbie's Stem Cell Transplant Journey
Oh, Debbie, thank you so much for your posts. It is getting closer every day to my dear hubby's stem cell transplant so I am absorbing every tip I can.
I am worried about nausea and other stomach issues the most for him as far as normal issues in the recovery phase go and keeping my fingers crossed he has no unforeseen complications in the process.
Keep posting....
I am worried about nausea and other stomach issues the most for him as far as normal issues in the recovery phase go and keeping my fingers crossed he has no unforeseen complications in the process.
Keep posting....
-
dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Debbie's Stem Cell Transplant Journey
Hi dogmom!
This whole process, so far, has been easier than I thought it would be. Even with the vomiting and nausea – it isn't like the flu; it happens, it's done, and you don't continue to have stomach pains. The underlying nausea does affect your taste and desire to eat, and in general, just your desire to converse, etc. Taking naps and trying not to worry about the sleep schedule also helps.
I wish your hubby the best with this and hope that things go smoothly!
This whole process, so far, has been easier than I thought it would be. Even with the vomiting and nausea – it isn't like the flu; it happens, it's done, and you don't continue to have stomach pains. The underlying nausea does affect your taste and desire to eat, and in general, just your desire to converse, etc. Taking naps and trying not to worry about the sleep schedule also helps.
I wish your hubby the best with this and hope that things go smoothly!
Re: Debbie's Stem Cell Transplant Journey
I am trying to prepare him that even if he has nausea, stomach issues, some fever and has to get blood and or platelet transfusions, all of these are normal recovery issues and does not mean his stem cell transplant is not working. He has felt so much better in his induction chemo than he was during the time before diagnosis I am worried that he will feel it is a setback when he goes through the stem cell transplant, because I know he will start to feel worse again for a time. I just don't want him to get discouraged. 
-
dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Debbie's Stem Cell Transplant Journey
Day +8
SHHH!! It's 3 a.m. And I'm feeling pretty damn good! Aside from the fact that my sleep schedules are all out of whack. I now get my longest stretch at around 1:30 p.m. Oh well. But, I don't mind this quiet time in the early hours. In fact, check out that full moon over the lake in the photo below. Really doesn't get any better than that. Really, I cannot complain. If I have to be house-bound for awhile, I certainly can't be in a better spot. Don't feel bad for me one little bit!
So, yesterday, I had about fifteen minutes to get ready to leave for the hospital, and I found a scissors. My hair has been looking awfully scraggly because I haven't been able to go out to see Zack! Miss that guy! So, I thought, "hmmm, so what if I screw it up?" It is a kind of liberating thought. Never have I been in this situation, where I could just play and say "what the heck?"
So, clip clip clip - and I don't think it turned out half bad. Much better than the wild, and in Kaiya's words "Grandma, your hair kinda looks like a spider web" LOLLOLOL out of the mouths of babes.
Yesterday at the hospital they gave me a bag of platelets just to boost me up a bit since my counts are so low. Interesting, they can give you any old blood type with platelets. So I am O negative and they gave me B positive platelets. Never knew that.
All things remain the same, as far as I know this morning. I thought I detected minute bone pain this morning, but that would be too early. When engraftment occurs, bone pain can be a sign of engraftment starting. We don't anticipate that until maybe Monday.
(Isn't engraftment amazing? Those tiny stem cells just find their own way to where they need to beg? They put them in your blood, and whoosh, off they go to find a little niche in my bone marrow. I envision them tucking themselves into a fetal position there and sucking on their thumbs. LOL. My own little scientific interpretation!
Anyway,
But know this: This morning, I feel really good. Energy is up, nausea is down, and I'm just waiting for those little buggers to nestle into that bone marrow and start sucking on their thumbs!!
SHHH!! It's 3 a.m. And I'm feeling pretty damn good! Aside from the fact that my sleep schedules are all out of whack. I now get my longest stretch at around 1:30 p.m. Oh well. But, I don't mind this quiet time in the early hours. In fact, check out that full moon over the lake in the photo below. Really doesn't get any better than that. Really, I cannot complain. If I have to be house-bound for awhile, I certainly can't be in a better spot. Don't feel bad for me one little bit!
So, yesterday, I had about fifteen minutes to get ready to leave for the hospital, and I found a scissors. My hair has been looking awfully scraggly because I haven't been able to go out to see Zack! Miss that guy! So, I thought, "hmmm, so what if I screw it up?" It is a kind of liberating thought. Never have I been in this situation, where I could just play and say "what the heck?"
So, clip clip clip - and I don't think it turned out half bad. Much better than the wild, and in Kaiya's words "Grandma, your hair kinda looks like a spider web" LOLLOLOL out of the mouths of babes.
Yesterday at the hospital they gave me a bag of platelets just to boost me up a bit since my counts are so low. Interesting, they can give you any old blood type with platelets. So I am O negative and they gave me B positive platelets. Never knew that.
All things remain the same, as far as I know this morning. I thought I detected minute bone pain this morning, but that would be too early. When engraftment occurs, bone pain can be a sign of engraftment starting. We don't anticipate that until maybe Monday.
(Isn't engraftment amazing? Those tiny stem cells just find their own way to where they need to beg? They put them in your blood, and whoosh, off they go to find a little niche in my bone marrow. I envision them tucking themselves into a fetal position there and sucking on their thumbs. LOL. My own little scientific interpretation!
Anyway,
But know this: This morning, I feel really good. Energy is up, nausea is down, and I'm just waiting for those little buggers to nestle into that bone marrow and start sucking on their thumbs!!
- IMG_5251v2.jpg (103.84 KiB) Viewed 1261 times
Re: Debbie's Stem Cell Transplant Journey
Kathy,
I know it is hard to keep spirits up through this process, but you are doing a wonderful job of preparing your husband ahead of time.
The hardest things so far for me were this:
The melphalan infusion - It is a STRONG chemical feeling. Pervades all of your senses, and you feel different, the room takes on a little different hue. I wasn't prepared for that, nor possibly, would it be advisable to be apprehensive about it. I thought this - GOOD, this is STRONG stuff and it is going to WIPE OUT that cancer!!!
The infusion of stem cells - I reacted. Now, most people don't and won't react to them. It should be a day of celebration - a new birthday.
The nausea - It is an annoyance. Always thinking when to take the pill, when will we be driving, what have I eaten.
Sleep patterns - Throw them out the window. Sleep when you want, be awake when you are.
The best advice I have for hubby is this. Early stem cell transplant, right now, is our best chance of getting a long-term remission. So, if we have some bumps along this path, ride them out and stay the course!
I am rooting for you! When do you begin? Also, putting in the PICC line was nothing at all.
I know it is hard to keep spirits up through this process, but you are doing a wonderful job of preparing your husband ahead of time.
The hardest things so far for me were this:
The melphalan infusion - It is a STRONG chemical feeling. Pervades all of your senses, and you feel different, the room takes on a little different hue. I wasn't prepared for that, nor possibly, would it be advisable to be apprehensive about it. I thought this - GOOD, this is STRONG stuff and it is going to WIPE OUT that cancer!!!
The infusion of stem cells - I reacted. Now, most people don't and won't react to them. It should be a day of celebration - a new birthday.
The nausea - It is an annoyance. Always thinking when to take the pill, when will we be driving, what have I eaten.
Sleep patterns - Throw them out the window. Sleep when you want, be awake when you are.
The best advice I have for hubby is this. Early stem cell transplant, right now, is our best chance of getting a long-term remission. So, if we have some bumps along this path, ride them out and stay the course!
I am rooting for you! When do you begin? Also, putting in the PICC line was nothing at all.
Re: Debbie's Stem Cell Transplant Journey
Debbie,
I am so glad you are doing well. I am a lab tech, and, yes, blood type does not matter with platelets. Platelets do not contain antibodies that would work against you if it is not the same blood type. It is funny how that works.
The photo is beautiful! Keep posting
I am so glad you are doing well. I am a lab tech, and, yes, blood type does not matter with platelets. Platelets do not contain antibodies that would work against you if it is not the same blood type. It is funny how that works.
The photo is beautiful! Keep posting
-
dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Debbie's Stem Cell Transplant Journey
Thank you Debbie so much for this post. I, too, am on the edge of my seat. I was diagnosed with high-risk myeloma in late January. I have responded very well to the chemo (Revlimid, Velcade and dex). I am just beginning my 3rd round (3 weeks on and one week off each round), but my numbers are looking so good we are starting to look at the autologous stem cell transplant in the near future.
I am so grateful for your diligence in posting your experience for others. I will be following you soon. Your picture of the lake is sooooo beautiful. So calming and healing.
Thank you again for sharing your thoughts and courage. You are in my prayers and you are doing great! Hang in there!
I am so grateful for your diligence in posting your experience for others. I will be following you soon. Your picture of the lake is sooooo beautiful. So calming and healing.
Thank you again for sharing your thoughts and courage. You are in my prayers and you are doing great! Hang in there!
-
BLK - Name: Brenda
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: January 22, 2016
- Age at diagnosis: 55
Re: Debbie's Stem Cell Transplant Journey
Days +9 and +10
Things are marching along!!
Those little tiny stem cells have found their way into my bone marrow, they have made themselves comfortable there and have begun the work of making my new immune system! My white blood cell count went from 0 on Day +7, to 0.1 on Day +8, and a pretty big jump to 0.4 on Day +9! So, YaY! - go to work little stem cells, do your thing!! (I talk to them all of the time : ) )
My platelets are low from the chemo, so I received some platelets on Day +7. I, also, received more platelets yesterday (Day +9). These help the blood to clot and prevent infection. The nurse said that hardly no one ever reacts when getting platelets. Well, then there is me. So, of course my eye swelled up huge and I got hives on my face. Lots of Benadryl and hydrocortisone and they finally released me to go home and sleep it off. Just seems like my body is going to put up a fight with any and everything that comes its way. LOL
My hematocrit and hemoglobin have been slowly dipping down too (this is normal with the transplant), but means that I could be in need of red blood cells in a day or two. This is always a challenge for me because my blood is very hard to cross-type / match. Lots of little buggers in there! But they did manage to find 2 units to put on hold for me. Hmmm, I wonder how many people typically react when receiving red blood cells? I can tell you of one who might be likely?! No! - staying positive.
Up until now, I have not had a good amount of energy, and the continuous underlying nausea makes conversing, etc., difficult. Just sort of like to sit around right now and watch some mindless show. LOL Or watch the life out my window. Although, the past 2 days I have been picking up Candy Crush once in awhile - since it is almost COMPLETELY mindless it doesn’t aggravate the nausea. I still haven’t gotten into a good book. But, it is on my list of things to do!! I also have some old Nintendo games that I want to re-visit. I'd like to say that I'm going to write a novel or research something important ... but, well, nope, guess not. Who knows? maybe there will still come some inspiration.
Bob has commented that “I’m back!” as he has seen a bit more light in my eyes, and I’m talking a bit more, jumping in here and there with stuff around the house. I'm not sure that I'm totally back, but enough so that he is noticing this! So that is a good thing!
I’ve put Zumba on the back burner for a couple of days, just until the nausea passes. The nausea is MUCH better, but I still get underlying waves and I pre-medicate to stay on top of it. I’m walking the halls and the stairs more than I need to (just making extra trips for now for some exercise). I’ll start back with my low-level Zumba in a few days and see how it goes.
Doing this as an outpatient has been great! I can’t imagine how difficult it would be to stay in a small hospital room for 3 weeks time!
Food - we are just making sure that we cook everything very well (Bob's term: just cook the sh*t out of it!"). I like baked walleye - light flavor, chicken breast with light sauce over rice, chop suey with canned vegetables, ham steak. These are a few dinners that Bob has made that I enjoyed in spite of nausea. Oh, and surprisingly spaghetti? Who would have thought? I gave up drinking water for a few days and stuck to ginger ale and juice. Just swish your teeth a lot to avoid cavities!
We STOCKED the house prior to transplant with canned veggies, canned fruits, frozen veggies, frozen meats and fish, eggs, milk – just really stocked up to avoid those 'germy' grocery stores.
Anyway, hope you all had a wonderful Easter!! Bob and I had a ham steak and tater tots! And it was awesome!
Marching forward!!
Things are marching along!!
Those little tiny stem cells have found their way into my bone marrow, they have made themselves comfortable there and have begun the work of making my new immune system! My white blood cell count went from 0 on Day +7, to 0.1 on Day +8, and a pretty big jump to 0.4 on Day +9! So, YaY! - go to work little stem cells, do your thing!! (I talk to them all of the time : ) )
My platelets are low from the chemo, so I received some platelets on Day +7. I, also, received more platelets yesterday (Day +9). These help the blood to clot and prevent infection. The nurse said that hardly no one ever reacts when getting platelets. Well, then there is me. So, of course my eye swelled up huge and I got hives on my face. Lots of Benadryl and hydrocortisone and they finally released me to go home and sleep it off. Just seems like my body is going to put up a fight with any and everything that comes its way. LOL
My hematocrit and hemoglobin have been slowly dipping down too (this is normal with the transplant), but means that I could be in need of red blood cells in a day or two. This is always a challenge for me because my blood is very hard to cross-type / match. Lots of little buggers in there! But they did manage to find 2 units to put on hold for me. Hmmm, I wonder how many people typically react when receiving red blood cells? I can tell you of one who might be likely?! No! - staying positive.
Up until now, I have not had a good amount of energy, and the continuous underlying nausea makes conversing, etc., difficult. Just sort of like to sit around right now and watch some mindless show. LOL Or watch the life out my window. Although, the past 2 days I have been picking up Candy Crush once in awhile - since it is almost COMPLETELY mindless it doesn’t aggravate the nausea. I still haven’t gotten into a good book. But, it is on my list of things to do!! I also have some old Nintendo games that I want to re-visit. I'd like to say that I'm going to write a novel or research something important ... but, well, nope, guess not. Who knows? maybe there will still come some inspiration.
Bob has commented that “I’m back!” as he has seen a bit more light in my eyes, and I’m talking a bit more, jumping in here and there with stuff around the house. I'm not sure that I'm totally back, but enough so that he is noticing this! So that is a good thing!
I’ve put Zumba on the back burner for a couple of days, just until the nausea passes. The nausea is MUCH better, but I still get underlying waves and I pre-medicate to stay on top of it. I’m walking the halls and the stairs more than I need to (just making extra trips for now for some exercise). I’ll start back with my low-level Zumba in a few days and see how it goes.
Doing this as an outpatient has been great! I can’t imagine how difficult it would be to stay in a small hospital room for 3 weeks time!
Food - we are just making sure that we cook everything very well (Bob's term: just cook the sh*t out of it!"). I like baked walleye - light flavor, chicken breast with light sauce over rice, chop suey with canned vegetables, ham steak. These are a few dinners that Bob has made that I enjoyed in spite of nausea. Oh, and surprisingly spaghetti? Who would have thought? I gave up drinking water for a few days and stuck to ginger ale and juice. Just swish your teeth a lot to avoid cavities!
We STOCKED the house prior to transplant with canned veggies, canned fruits, frozen veggies, frozen meats and fish, eggs, milk – just really stocked up to avoid those 'germy' grocery stores.
Anyway, hope you all had a wonderful Easter!! Bob and I had a ham steak and tater tots! And it was awesome!
Marching forward!!
Re: Debbie's Stem Cell Transplant Journey
Debbie,
Thank you so much for posting! I didn't think about even think about reading the Beacon until today.
Update:
Janet just came home from UCSF today, Day 13 for us, and she's doing really well. Just cooked her salmon and baked potatoes. She ate it all! Would have come home two days early but low potassium, hence the baked potatoes!
You are spot on about the exercise, helps a lot! We were doing laps around the 14th floor. 12 laps equals a mile. Made the goal every day but one (nausea and diarrhea took it's toll).
Best of luck Debbie!
Thank you so much for posting! I didn't think about even think about reading the Beacon until today.
Update:
Janet just came home from UCSF today, Day 13 for us, and she's doing really well. Just cooked her salmon and baked potatoes. She ate it all! Would have come home two days early but low potassium, hence the baked potatoes!
You are spot on about the exercise, helps a lot! We were doing laps around the 14th floor. 12 laps equals a mile. Made the goal every day but one (nausea and diarrhea took it's toll).
Best of luck Debbie!
-
JohnBoy5456 - Name: John
- Who do you know with myeloma?: Janet
- When were you/they diagnosed?: 6/15/15
- Age at diagnosis: 64
Re: Debbie's Stem Cell Transplant Journey
Day +10 and Day +11
By DebbieJ54 (23 hours ago)
So, I'm an engrafting machine! White blood cell count went up from 0.4 to 2.6 yesterday! That is a huge jump! Granted, they are baby cells and can't do the job of a mature cell - yet. But it is a start! I'm showing some other signs of engrafting that aren't so nice - a rash and this morning (Day +11) I woke up with my face all swollen. Not sure if it is engraftment syndrome or if I'm allergic to the cream that the doc prescribed for the rash. Either way, I go into the hospital in about an hour or so, and they will figure things out. Evidently, I react to stuff! Never really before, but NOW I do!
All in all, I feel good today. It is almost 9:00 am, and I haven't taken nausea med today! That is a huge plus!
ONWARD!
Day +11 and Day+12
By DebbieJ54 (2.5 hours ago)
Well, turns out the rash and face swelling was all part of my new cells making themselves known - they are announcing their appearance! It is all good. Doctor will prescribe IV steroid to clear it up. My white blood cell count has gone from 2.6 to 4.5, so again huge jumps!
Well, I do feel a draft on top of my head ... and a somewhat liberating feeling of relief for having done it! Yep, we got home from the hospital with my clothing covered in hair - just coming out by handfuls and I looked at Bob and said "Let's do it!" It was actually kind of fun, and taking a shower is SO easy now!! I can get ready in a flash! I don't think anyone has ever seen my scalp before - I was born with a full head of hair! So I wasn't sure if there were any big birthmarks, or lumps or whatever!! Happy to say it's all clear!
Yesterday was a good day at the hospital - white cells up to 4.5 from 2.6, and the doctor has taken me off of my food restrictions (within reason). Still have to wear my mask at all times (except here in the house) and avoid people, but it's a slow process and the numbers are going UP UP UP!! So we are feeling energized and happy! Oh yes, and he put me on a steroid for the next day or so and that has me energized too, LOL!
By DebbieJ54 (23 hours ago)
So, I'm an engrafting machine! White blood cell count went up from 0.4 to 2.6 yesterday! That is a huge jump! Granted, they are baby cells and can't do the job of a mature cell - yet. But it is a start! I'm showing some other signs of engrafting that aren't so nice - a rash and this morning (Day +11) I woke up with my face all swollen. Not sure if it is engraftment syndrome or if I'm allergic to the cream that the doc prescribed for the rash. Either way, I go into the hospital in about an hour or so, and they will figure things out. Evidently, I react to stuff! Never really before, but NOW I do!
All in all, I feel good today. It is almost 9:00 am, and I haven't taken nausea med today! That is a huge plus!
ONWARD!
Day +11 and Day+12
By DebbieJ54 (2.5 hours ago)
Well, turns out the rash and face swelling was all part of my new cells making themselves known - they are announcing their appearance! It is all good. Doctor will prescribe IV steroid to clear it up. My white blood cell count has gone from 2.6 to 4.5, so again huge jumps!
Well, I do feel a draft on top of my head ... and a somewhat liberating feeling of relief for having done it! Yep, we got home from the hospital with my clothing covered in hair - just coming out by handfuls and I looked at Bob and said "Let's do it!" It was actually kind of fun, and taking a shower is SO easy now!! I can get ready in a flash! I don't think anyone has ever seen my scalp before - I was born with a full head of hair! So I wasn't sure if there were any big birthmarks, or lumps or whatever!! Happy to say it's all clear!
Yesterday was a good day at the hospital - white cells up to 4.5 from 2.6, and the doctor has taken me off of my food restrictions (within reason). Still have to wear my mask at all times (except here in the house) and avoid people, but it's a slow process and the numbers are going UP UP UP!! So we are feeling energized and happy! Oh yes, and he put me on a steroid for the next day or so and that has me energized too, LOL!
- IMG_0151v2.jpg (62.57 KiB) Viewed 855 times
Return to Treatments & Side Effects