Hi all.
It's the end of Day +6 post transplant. My medical team is keeping my nausea at bay really well. I get regular intravenous infusions and tablets. Unfortunately, the diarrhoea also has set in. Was worse yesterday, but today not too severe.
Have a lack of appetite and a little weight loss. They have awesome meal replacements here. Come from the Netherlands. Have had a cappuccino one on ice. Was almost like a cream liqueur. Ha ha.
Energy levels down and muscle weakness makes daily exercises a chore. But the physio pushes me. But mentally am doing well.
Not sure about blood levels. Hemoglobin was still up yesterday.
Hope to have more results tomorrow.
Thanks everyone for the support. This forum is awesome.
Forums
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Barbara SA - Name: Barbara SA
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 55
Re: Barbara's Transplant Journey (South Africa)
Hi Barbara,
Your appetite will pick back up shortly. My husband had no nausea but a little diarrhea. He said it was nothing he couldn't handle. Good that you are getting the meal replacements.
My husband's hemoglobin went up for a while and then it dropped. He got some blood today. His platelets are still dropping, but they said that usually comes back up once the white blood cell counts start coming up.
Just hang in there. I will be praying for you.
Your appetite will pick back up shortly. My husband had no nausea but a little diarrhea. He said it was nothing he couldn't handle. Good that you are getting the meal replacements.
My husband's hemoglobin went up for a while and then it dropped. He got some blood today. His platelets are still dropping, but they said that usually comes back up once the white blood cell counts start coming up.
Just hang in there. I will be praying for you.
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TCG - Name: Tara
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 43
Re: Barbara's Transplant Journey (South Africa)
Barbara,
Wonderful that you are doing so well; just take it day by day. The end is almost in sight!
My husband also completely lost his appetite, and also was just sick of the hospital food options, so he did the meal replacements for a few days. But after a few weeks at home, it was back to normal.
For some reason, he mostly only wanted fried food, though that wasn't great for the GI tract! He is also a coffee lover, and couldn't even stand the smell of it for at least a month. We weren't sure if he would ever get back to drinking it, but sure enough, now he is back to his regular two cups a day.
Wonderful that you are doing so well; just take it day by day. The end is almost in sight!
My husband also completely lost his appetite, and also was just sick of the hospital food options, so he did the meal replacements for a few days. But after a few weeks at home, it was back to normal.
For some reason, he mostly only wanted fried food, though that wasn't great for the GI tract! He is also a coffee lover, and couldn't even stand the smell of it for at least a month. We weren't sure if he would ever get back to drinking it, but sure enough, now he is back to his regular two cups a day.
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texgal79 - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 43
Re: Barbara's Transplant Journey (South Africa)
Day +8
I started with a mild fever last night. 37.8 C (100.0 F). The nausea kept under control, and the only other issue is bouts of diarrhoea.
Yesterday I had no energy and slept the day away. Then slept really well last night again. Just minimal energy. I can eat, but only really enjoy sweetness and saltiness.
To the rest of our cross continental group, I trust your progress is also good. Hopefully we will all be able to celebrate Christmas with our families.
I started with a mild fever last night. 37.8 C (100.0 F). The nausea kept under control, and the only other issue is bouts of diarrhoea.
Yesterday I had no energy and slept the day away. Then slept really well last night again. Just minimal energy. I can eat, but only really enjoy sweetness and saltiness.
To the rest of our cross continental group, I trust your progress is also good. Hopefully we will all be able to celebrate Christmas with our families.
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Barbara SA - Name: Barbara SA
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 55
Re: Barbara's Transplant Journey (South Africa)
Barbara, hopefully the fever is a sign that your stem cells are starting to engraft. I went through the same around Day +9 or Day +10. Interesting the different foods that are appetizing to us all. I craved frozen food (pizza, egg rolls, etc) and nothing else!
I think you said you're doing your transplant inpatient. Any word on a release date? Sounds like things are going well - I'm so happy for you!
I think you said you're doing your transplant inpatient. Any word on a release date? Sounds like things are going well - I'm so happy for you!
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Barbara's Transplant Journey (South Africa)
Hi everyone,
I am back and doing well. It's Day+11 post transplant and I have been in hospital for 2 weeks now. The antibiotics are ongoing and seem to have the infection and fever under control. I was lucky to only have the one temperature spike and rigor session on Saturday night, but prompt treatment was effective.
Diarrhoea stopped yesterday and is mostly back to normal now. I am still on 2 different antinausea meds, which are also to help get my appetite back.
The staff are so accommodating with meals. I order a day in advance and now add extras like crackerbread and cheese and powdered soup.
All dairy is UHT and all food, even fruit, is cooked. As my tastes are only either sweet or sour or salty, little of any food has taste. Even tea, which is from the English side of me, is tasteless. So they found me some sachets of hot chocolate and that is delicious.
Pancakes with cheese or tinned mushroom sauce is a very palatable meal.
Yesterday was my husband's and my 35th wedding anniversary, and we were able to have a glass of sparkling grape juice as a toast.
My blood counts yesterday showed the platelets I received on Sunday are helping and my red cells are still okay too. White cells showed a tiny increase, so I hope tomorrow's test show a better one. Will keep you posted.
Dean: I am so sorry to hear of the rash and reaction as well as the rotavirus. But keep on, as it is not long till you are home for Christmas with your family
Chad: glad you are doing well. Keep on, the end is nigh. And Santa is too.
I am back and doing well. It's Day+11 post transplant and I have been in hospital for 2 weeks now. The antibiotics are ongoing and seem to have the infection and fever under control. I was lucky to only have the one temperature spike and rigor session on Saturday night, but prompt treatment was effective.
Diarrhoea stopped yesterday and is mostly back to normal now. I am still on 2 different antinausea meds, which are also to help get my appetite back.
The staff are so accommodating with meals. I order a day in advance and now add extras like crackerbread and cheese and powdered soup.
All dairy is UHT and all food, even fruit, is cooked. As my tastes are only either sweet or sour or salty, little of any food has taste. Even tea, which is from the English side of me, is tasteless. So they found me some sachets of hot chocolate and that is delicious.
Pancakes with cheese or tinned mushroom sauce is a very palatable meal.
Yesterday was my husband's and my 35th wedding anniversary, and we were able to have a glass of sparkling grape juice as a toast.
My blood counts yesterday showed the platelets I received on Sunday are helping and my red cells are still okay too. White cells showed a tiny increase, so I hope tomorrow's test show a better one. Will keep you posted.
Dean: I am so sorry to hear of the rash and reaction as well as the rotavirus. But keep on, as it is not long till you are home for Christmas with your family
Chad: glad you are doing well. Keep on, the end is nigh. And Santa is too.
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Barbara SA - Name: Barbara SA
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 55
Re: Barbara's Transplant Journey (South Africa)
Hi all. It's Day +13.
Monday had been a good day. I slept well Monday night. Tuesday was also a good day and slept well again. I had started eating lots of little snack meals and was tolerating that well and as such getting nutrition in. I just miss salad and fresh vegetables.
So when the doctor came in with a huge smile on her face yesterday morning, asking if I felt well, she told me my neutrophils had increased over 2 days from 0,06 to 1,5. I was ecstatic as was she. They like the level to be 0.5, so I will be going home if in am fever free for 24 hours.
It's both exciting and scary at the same time. I can't wait to see trees and flowers again. Something other than brick and concrete and tiny patches of sky. But scary because I want to carry on getting well and not have a setback that is not going to be sorted at the press of a hospital bell.
I am off antibiotics now and my temperature has stayed normal. They gave me some potassium and magnesium, as levels were a bit low (probably from diarrhoea). Also, I now will have a immunoglobulin infusion every 2 weeks to get immunity levels up to scratch again.
So I will be home in time for Christmas. In fact, we are going to do the tree and decorating this weekend.
I have been given a new physical lease of life and I am so thankful. The ongoing prayers and support of my wonderful family and friends has carried me through the journey.
Chad, Dean, and Ashwin (where are you? you've been silent) – my wishes are that you will also be home and healthy for Christmas.
Monday had been a good day. I slept well Monday night. Tuesday was also a good day and slept well again. I had started eating lots of little snack meals and was tolerating that well and as such getting nutrition in. I just miss salad and fresh vegetables.
So when the doctor came in with a huge smile on her face yesterday morning, asking if I felt well, she told me my neutrophils had increased over 2 days from 0,06 to 1,5. I was ecstatic as was she. They like the level to be 0.5, so I will be going home if in am fever free for 24 hours.
It's both exciting and scary at the same time. I can't wait to see trees and flowers again. Something other than brick and concrete and tiny patches of sky. But scary because I want to carry on getting well and not have a setback that is not going to be sorted at the press of a hospital bell.
I am off antibiotics now and my temperature has stayed normal. They gave me some potassium and magnesium, as levels were a bit low (probably from diarrhoea). Also, I now will have a immunoglobulin infusion every 2 weeks to get immunity levels up to scratch again.
So I will be home in time for Christmas. In fact, we are going to do the tree and decorating this weekend.
I have been given a new physical lease of life and I am so thankful. The ongoing prayers and support of my wonderful family and friends has carried me through the journey.
Chad, Dean, and Ashwin (where are you? you've been silent) – my wishes are that you will also be home and healthy for Christmas.
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Barbara SA - Name: Barbara SA
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 55
Re: Barbara's Transplant Journey (South Africa)
Hi Barbara,
Great to hear that you're recovering so well. Hope this streak continues and wish you all the best so that you can spend Christmas at home!
I've had my stem cells infusion today and it went off quite smoothly. They gave me some Benadryl (diphenhydramine) in the IV, so I was kind of floating thru the procedure. Still feeling fine, with good energy levels, but I believe that the next few days may be tougher. Keeping fingers crossed.
My family is here and they've been very supportive. In fact, this adversity has bonded us closer. Shall keep you posted about my journey.
Ashwin
Great to hear that you're recovering so well. Hope this streak continues and wish you all the best so that you can spend Christmas at home!
I've had my stem cells infusion today and it went off quite smoothly. They gave me some Benadryl (diphenhydramine) in the IV, so I was kind of floating thru the procedure. Still feeling fine, with good energy levels, but I believe that the next few days may be tougher. Keeping fingers crossed.
My family is here and they've been very supportive. In fact, this adversity has bonded us closer. Shall keep you posted about my journey.
Ashwin
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ashwin13 - When were you/they diagnosed?: Diagnosed two and half years ago
- Age at diagnosis: 64
Re: Barbara's Transplant Journey (South Africa)
Hi Barbara,
My mother, 55 years old, was diagnosed with multiple myeloma just this November 14, 2016. I've read your journey and I hope that my mother will be as positive as you. She is still shocked about the diagnosis and we will have her first check up today for the full blast treatment.
Praying for the best result. God bless.
My mother, 55 years old, was diagnosed with multiple myeloma just this November 14, 2016. I've read your journey and I hope that my mother will be as positive as you. She is still shocked about the diagnosis and we will have her first check up today for the full blast treatment.
Praying for the best result. God bless.
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Febie0021 - Name: Febie Gacusan
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: November 14 2016
- Age at diagnosis: 55
Re: Barbara's Transplant Journey (South Africa)
Hi,
I'm so pleased all has gone well for you. Thanks for your kind words.. Have a great 2017.
Regards,
Dean
I'm so pleased all has gone well for you. Thanks for your kind words.. Have a great 2017.
Regards,
Dean
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
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