Thank you for journaling and letting us know about your sister's journey. It sounds so optimistic that she might be able to go home the end of the year. Here's hoping she will be able to, that she will be ready.
Sending healing energy across the miles.
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Re: A's Autologous Stem Cell Transplant in Russia
Thank you, Moonscape, healing energy is much needed.
It's Day +15 and there is still no change. She cannot get any food down and is very discouraged a lot of time. Not sure where it is all going. It looks like the treatment did what it was supposed to have done with the cancer, but its side effects may be too much for my sister to handle. The skin on her hands is seriously damaged, cracked, and bleeding, she has stomach ache and no energy whatsoever. We are still trying to be positive as her blood results are not so bad, but it is getting more and more scary and uncertain.
It's Day +15 and there is still no change. She cannot get any food down and is very discouraged a lot of time. Not sure where it is all going. It looks like the treatment did what it was supposed to have done with the cancer, but its side effects may be too much for my sister to handle. The skin on her hands is seriously damaged, cracked, and bleeding, she has stomach ache and no energy whatsoever. We are still trying to be positive as her blood results are not so bad, but it is getting more and more scary and uncertain.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: A's Autologous Stem Cell Transplant in Russia
It’s day +18. Still in hospital. High fever (38.9 Deg. C / 102 Deg. F) and pain in the esophagus area again. Just went in for an endoscopy to investigate what is going on. Quite scared in case the pain becomes worse from the procedure, but at least, hopefully, the doctors will have better idea about the course and come up with a better treatment. Please send healing energy.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: A's Autologous Stem Cell Transplant in Russia
Gala,
So sorry to hear about your sister's struggles. I am at Day +39 right now and feeling really well. Let your sister know she has a lot of brothers and sisters praying for her from all over the world who are recovering together from our transplants. I felt pretty nasty right up until Day +13 and then amazingly turned a corner and started feeling slightly better every day.
Please tell A to hang in there and that my prayers and thoughts are with her.
So sorry to hear about your sister's struggles. I am at Day +39 right now and feeling really well. Let your sister know she has a lot of brothers and sisters praying for her from all over the world who are recovering together from our transplants. I felt pretty nasty right up until Day +13 and then amazingly turned a corner and started feeling slightly better every day.
Please tell A to hang in there and that my prayers and thoughts are with her.
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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: A's Autologous Stem Cell Transplant in Russia
Hi Chad,
Thank you for your encouraging words and I am so glad you are doing well. I have been following your transplant story. I tell my sister about this forum and all the support that is offered. It does feel like a family, especially those who are recovering from a transplant right now.
My sister’s recovery is slow. It’s Day +21 and she is still in hospital. She went through a suspected sepsis, but luckily pulled through and her mucositis, esophagitis, and rash all improved. She is now able to swallow food, though she feels really sick and most food tastes bad.
The reason why she is still being held in hospital is fever. Though it went down a bit now that she is receiving a different antibiotic, it is still 37.8 degrees C (100 degrees F). Endoscopy and chest CT did not reveal infection, though she still has ulceration in her esophagus, but that is healing. Her WBC is 3. Today she also received another blood transfusion to keep anemia at bay. It is not so bad, but as the blood bank is going to be closed over the holidays, they decided to top her up.
She is being kept in the hospital over the New Year break (which is a major festivity in Russia and comes before Christmas, which is January 7). There are only two patients left now in the unit. Everybody else has been discharged. They have been put on a new ward together now. At first, my sister was not happy to share the room, as she gets up at night, turns on the light and makes herself some tea when she cannot sleep. But now she sees positives in having a roommate. They watch movies together and help each other if needed.
Thank you for your encouraging words and I am so glad you are doing well. I have been following your transplant story. I tell my sister about this forum and all the support that is offered. It does feel like a family, especially those who are recovering from a transplant right now.
My sister’s recovery is slow. It’s Day +21 and she is still in hospital. She went through a suspected sepsis, but luckily pulled through and her mucositis, esophagitis, and rash all improved. She is now able to swallow food, though she feels really sick and most food tastes bad.
The reason why she is still being held in hospital is fever. Though it went down a bit now that she is receiving a different antibiotic, it is still 37.8 degrees C (100 degrees F). Endoscopy and chest CT did not reveal infection, though she still has ulceration in her esophagus, but that is healing. Her WBC is 3. Today she also received another blood transfusion to keep anemia at bay. It is not so bad, but as the blood bank is going to be closed over the holidays, they decided to top her up.
She is being kept in the hospital over the New Year break (which is a major festivity in Russia and comes before Christmas, which is January 7). There are only two patients left now in the unit. Everybody else has been discharged. They have been put on a new ward together now. At first, my sister was not happy to share the room, as she gets up at night, turns on the light and makes herself some tea when she cannot sleep. But now she sees positives in having a roommate. They watch movies together and help each other if needed.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: A's Autologous Stem Cell Transplant in Russia
Day + 25
Still in hospital due to continuing low grade fever and also an inflammation in the port area. They investigated and luckily the infection is superficial. They have now removed the needle only and will do infusions by IV temporarily until the port area heals. She is still receiving antibiotics and some other supportive medication.
The rash is improving and eating/appetite is also better. There is anxiety and depressed mood at times. The hospital stay feels just too long. Hopefully, her condition remains stable and only improves from now on.
Still in hospital due to continuing low grade fever and also an inflammation in the port area. They investigated and luckily the infection is superficial. They have now removed the needle only and will do infusions by IV temporarily until the port area heals. She is still receiving antibiotics and some other supportive medication.
The rash is improving and eating/appetite is also better. There is anxiety and depressed mood at times. The hospital stay feels just too long. Hopefully, her condition remains stable and only improves from now on.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: A's Autologous Stem Cell Transplant in Russia
It's Day +28 and my sister has now been allowed to go home until the 9th of January (next Monday). She is OK, but has very little energy. The fatigue is very bad. Other than that, everything else is improving. The port inflammation has reduced and she has no fever. Her hands have cleared of rash and dark spots. The skin overall looks darker than before the transplant.
She is very happy to be home, and the family have prepared a room for her that they will keep particularly clean and sanitized. Her daughter is now having a cold, so she is staying with grandparents.
I will keep you posted.
She is very happy to be home, and the family have prepared a room for her that they will keep particularly clean and sanitized. Her daughter is now having a cold, so she is staying with grandparents.
I will keep you posted.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: A's Autologous Stem Cell Transplant in Russia
Oh Gala, that's wonderful news – both being home and all the signs of progress. Her spirits must be much improved, as well as your own!
Thank you so much for the updates, and tell your sister there are many strangers rooting for her.
Thank you so much for the updates, and tell your sister there are many strangers rooting for her.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: A's Autologous Stem Cell Transplant in Russia
Thank you, moonscape! Yes, we are very happy about it. It's a major milestone. The recovery is slow, there is difficulty with eating (feeling very full after just a couple of spoons of any food), nausea, and debilitating fatigue. We are trying to cheer her up the best we can. And this forum is a great support at this time for sure.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: A's Autologous Stem Cell Transplant in Russia
Hi Gala!
I wish your sister a successful recovery. She is young and can fight. She is stronger than this terrible disease.
My mother is also in Russia and she has been diagnosed with multiple myeloma in 2014. She was 61 at that time and decided that she wouldn't make any stem cell transplant. She had 8 courses of Velcade, then almost a year of a happy life, but multiple myeloma returned back. They were able to stop it with Revlimid and she is on maintenance therapy since then, but she is telling me that she might have issues with her kidneys plus she does not know how long she should take Revlimid as it is getting very challenging and hard.
Unfortunately my father passed away three months ago, and my mother lost a big support, but she still has my sister and her grandparents there.
I completely share your pain and understand how it is hard to be far away when your dearest person struggles. However you shouldn't give up and be support for your sister. It's great that we now have Skype, Internet, and can travel, though we have our own families here. Plus they make better treatments and make better quality of live.
I wish your sister a successful recovery. She is young and can fight. She is stronger than this terrible disease.
My mother is also in Russia and she has been diagnosed with multiple myeloma in 2014. She was 61 at that time and decided that she wouldn't make any stem cell transplant. She had 8 courses of Velcade, then almost a year of a happy life, but multiple myeloma returned back. They were able to stop it with Revlimid and she is on maintenance therapy since then, but she is telling me that she might have issues with her kidneys plus she does not know how long she should take Revlimid as it is getting very challenging and hard.
Unfortunately my father passed away three months ago, and my mother lost a big support, but she still has my sister and her grandparents there.
I completely share your pain and understand how it is hard to be far away when your dearest person struggles. However you shouldn't give up and be support for your sister. It's great that we now have Skype, Internet, and can travel, though we have our own families here. Plus they make better treatments and make better quality of live.
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Tanja07 - Name: Tanja
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: My mother was diagnosed in 2014
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