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Day 0 was today! Now what?
Today was Day 0 for my husband. It went well, better than I thought. I just cannot get over the smell of corn...YUCK! My husband is doing very well. I just keep waiting until the other shoe drops...what next? what to expect? when does nausea or other issues?
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Day 0 was today! Now what?
Hi LadyLib --
Hopefully, the whole event will be less traumatic than it sounds. The meds they give him will keep the nausea and mouth sores to a minimum. And if you ask the nurses, they'll show you how to track his blood and absolute neutrophil counts, which will help you gauge his progress.
As his caretaker, keep an eye out for any adverse reactions to the drugs they give him. EJ had trouble with one of the drugs they gave him for anxiety (it had the opposite affect, making him feel like he wasn't going to make it), and he developed a sever allergic reaction to some of the antibiotics they gave him. Make sure he gets up and walks everyday so he doesn't develop problems from being in bed too long.
It will be over before you know it!
Lyn
Hopefully, the whole event will be less traumatic than it sounds. The meds they give him will keep the nausea and mouth sores to a minimum. And if you ask the nurses, they'll show you how to track his blood and absolute neutrophil counts, which will help you gauge his progress.
As his caretaker, keep an eye out for any adverse reactions to the drugs they give him. EJ had trouble with one of the drugs they gave him for anxiety (it had the opposite affect, making him feel like he wasn't going to make it), and he developed a sever allergic reaction to some of the antibiotics they gave him. Make sure he gets up and walks everyday so he doesn't develop problems from being in bed too long.
It will be over before you know it!
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Day 0 was today! Now what?
Hi LadyLib, I hope all goes well. I have been watching your story unfold and am very interested in all the details. I was diagnosed around the same time as your husband but you are moving down the treatment time line quicker than myself. Your husband seems to be just a few steps ahead of me so everything he goes through I will be embarking on soon. May I ask where his treatment is happening? I will be going to Seattle. Best of luck.
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: Day 0 was today! Now what?
Thanks for your words of encouragement. He is being treated at Vanderbilt. They conduct about 250 transplants a year. We were blessed to have them so close to us, as our insurance only would allow centers considered Medical Centers of Excellence in transplant. He was the only Day 0 yesterday. They have 3 more today. They really celebrate it big with the patients on Day 0.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Day 0 was today! Now what?
I seemed to have various discomforts crop up for a couple of weeks, but nothing worrisome. I think for me the development of C-diff was probably the worse and the inability to sleep at night the second thing.
I wouldn't allow yourself to get overly concerned about anything if you can. It seems to me the procedure is much less dangerous than any surgery with anesthesia involved.
I wouldn't allow yourself to get overly concerned about anything if you can. It seems to me the procedure is much less dangerous than any surgery with anesthesia involved.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Day 0 was today! Now what?
My husband did well except for losing his appetite and slight nausea which the meds took care of. He walked several times a day and was out by +12. I believe he had 1 bag of platelets and 1 bag of RBCs. He also had potassium or magnesium every once in awhile. Overall the experience was rather tame. 
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Day 0 was today! Now what?
Hi LadyLib. Happy new year! I'm glad that your husband is doing well so far.
I want to give you a different perspective -- not to scare you, but just so you are prepared.
I had my SCT at Johns Hopkins, where the process is out-patient, and my daughter and I lived in an apartment across the street during the process. I was fine after the transplant itself, but did not do well after the second round of chemo. Even with the various medications, I started feeling lousy and by Day 7, I was sick enough that I was admitted for in-patient care. I couldn't keep anything down, even water, had bad sores in my mouth, throat, and digestive system, had horrible diarrhea, and had a fever just under 101. Being able to switch all of the medications to infusions until my guts healed and my neutrophil levels came back up was a God-send. So was morphine, which I needed for a few days.
Whether your husband does ok or gets sick for a while, it's all part of the journey. For me, that was 4 years ago, and I'm doing fine.
Please continue to let us know how he is doing -- and how you are holding up.
Dana
I want to give you a different perspective -- not to scare you, but just so you are prepared.
I had my SCT at Johns Hopkins, where the process is out-patient, and my daughter and I lived in an apartment across the street during the process. I was fine after the transplant itself, but did not do well after the second round of chemo. Even with the various medications, I started feeling lousy and by Day 7, I was sick enough that I was admitted for in-patient care. I couldn't keep anything down, even water, had bad sores in my mouth, throat, and digestive system, had horrible diarrhea, and had a fever just under 101. Being able to switch all of the medications to infusions until my guts healed and my neutrophil levels came back up was a God-send. So was morphine, which I needed for a few days.
Whether your husband does ok or gets sick for a while, it's all part of the journey. For me, that was 4 years ago, and I'm doing fine.
Please continue to let us know how he is doing -- and how you are holding up.
Dana
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Day 0 was today! Now what?
Thank you darmold for the encouragement.
We just completed Day +3. He is resting well. His only complaint so far has been gas and some soft stools. He appears to be very tired, wanting to sleep the bulk of the day. He still has a relatively good appetite. He is eating - no nausea, no hair loss, etc. However, he still has some big days ahead. I will keep you all posted.
We just completed Day +3. He is resting well. His only complaint so far has been gas and some soft stools. He appears to be very tired, wanting to sleep the bulk of the day. He still has a relatively good appetite. He is eating - no nausea, no hair loss, etc. However, he still has some big days ahead. I will keep you all posted.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Day 0 was today! Now what?
I wanted to add that mike did have a " neutropenic fever/ engraftment fever" for 3 days. The doctors/ nurses said it was very common and not a big deal, however I wish they would have warned me that it was a possibility ( as it scared me to death they had to have him place ice packs under his arms to keep the fever down)!!! Once his counts started back up the fever went away. Also, his hair didn't fall out till after he came home. One more warning after he got out and was not receiving the growth factor shot everyday his wbc dropped from discharge numbers by 4000 then slowly went back up as his body made them without the aid of the GCSF.
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Day 0 was today! Now what?
Opps just deleted my post! I will try again.
I don't want to downplay my expeirence, it was very tough at times, and i don't think I could have done it outpatient. That said, my case was pretty much "textbook" according to my doctor and regardless of the symptoms no major complications.
I had nausea from about day 3. After a few days my meds were switched to IV. Even though I sucked ice, I got bad mucositis and my tounge and throat sloughed off. I think this is why I felt like gagging all the time, even though I only actually got sick 5 times or so. Because of this my dr. predicted I'd have bad diarhea, and yup it happened. They don't give me anything for it, because of the risk of c. diff. so it sucked.
I had a reaction to the antinausea meds that was like a kind of a seizure. So I couldn't take much in the way of relief. They gave me a few doeses of dex and gravol and other stuff.
The chemo irritated my Kidney (I did not have any kidney issues going into it) and it could not concentrate water. So I had to use the restroom every 20 minutes, and urgently! I rarely slept because of this. After loosing so much fluid my blood pressure woud not stay up and I had two bags of saline running through my pump, and another iv in my arm! I asked the nurses to stop giving me fluids as I was getting annoyed having to pee contstantly, but they said the fluids were barely keeping up with what my body was loosing (they weigh you everyday to track this and make you monitor your pee in this measuring thing int he toilet)
The ICU team took on my case,becuase my blood pressure kept crashing with the fluid issue. I was told to stay in bed unless a nurse was there since I have a history of fainting. They decided I could stay on the transplant floor and didn't have to go to ICU since it is critical care, but they nurses were reporting my vitals to them etc.
Once I started nupegon shots and my new stem cells kicked in it was amazing how quickly I started to feel better, and the diarhea went away! It also was when I got a few transfusions so that helped I'm sure.
Since my transplant I've been off all Myeloma Meds, so I would do a second if and when I relapse. I'm 3.5 Years remission since then.
Not sure if it makes a difference by I am 35 and female with no other health issues. (other then Myeloma)
I don't want to downplay my expeirence, it was very tough at times, and i don't think I could have done it outpatient. That said, my case was pretty much "textbook" according to my doctor and regardless of the symptoms no major complications.
I had nausea from about day 3. After a few days my meds were switched to IV. Even though I sucked ice, I got bad mucositis and my tounge and throat sloughed off. I think this is why I felt like gagging all the time, even though I only actually got sick 5 times or so. Because of this my dr. predicted I'd have bad diarhea, and yup it happened. They don't give me anything for it, because of the risk of c. diff. so it sucked.
I had a reaction to the antinausea meds that was like a kind of a seizure. So I couldn't take much in the way of relief. They gave me a few doeses of dex and gravol and other stuff.
The chemo irritated my Kidney (I did not have any kidney issues going into it) and it could not concentrate water. So I had to use the restroom every 20 minutes, and urgently! I rarely slept because of this. After loosing so much fluid my blood pressure woud not stay up and I had two bags of saline running through my pump, and another iv in my arm! I asked the nurses to stop giving me fluids as I was getting annoyed having to pee contstantly, but they said the fluids were barely keeping up with what my body was loosing (they weigh you everyday to track this and make you monitor your pee in this measuring thing int he toilet)
The ICU team took on my case,becuase my blood pressure kept crashing with the fluid issue. I was told to stay in bed unless a nurse was there since I have a history of fainting. They decided I could stay on the transplant floor and didn't have to go to ICU since it is critical care, but they nurses were reporting my vitals to them etc.
Once I started nupegon shots and my new stem cells kicked in it was amazing how quickly I started to feel better, and the diarhea went away! It also was when I got a few transfusions so that helped I'm sure.
Since my transplant I've been off all Myeloma Meds, so I would do a second if and when I relapse. I'm 3.5 Years remission since then.
Not sure if it makes a difference by I am 35 and female with no other health issues. (other then Myeloma)
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Lys 2012
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