I'd like to join the others in documenting a stem cell transplant journey. My sister is in Russia. She has recently received an inpatient transplant. She is currently in a 'sterile' room, no visitations allowed. She has had quite a rocky road so far and we do hope she can pull through. Please send good wishes.
My sister A was diagnosed with Stage 3 Multiple Myeloma about a year ago. She had been quite ill getting progressively worse for at least a year prior to that, but the doctors could not identify the cause of her multiple complaints and bad blood test results. Her main complaint was extreme pain in her legs, especially when walking. She would cry after having to walk into her doctor’s office and was even suspected to be a hypochondriac. Then she developed what appeared to be a benign cyst in her breast. Soon after the cyst was removed another lump appeared in the same breast that felt different – hard and painful. When it was also removed, the pathology results showed malignancy, but it took some time and another surgery to remove lymph nodes in case it was breast cancer, before it was identified as a soft tissue plasmocytoma. Further tests showed extensive skeletal involvement with multiple bone sessions from skull to toes.
I described my sister’s story in these threads:
https://myelomabeacon.org/forum/little-sister-in-a-lot-of-pain-t6843.html
https://myelomabeacon.org/forum/high-blood-pressure-during-treatment-t6857.html
https://myelomabeacon.org/forum/stomach-fullness-during-treatment-t6898.html
She actually responded extremely well to treatment and her bone pain was completely gone. She said she was feeling better than she had felt for a very long time. Unfortunately, she then developed multiple cutaneous plasmocytomas and had to undergo a very aggressive EDAP treatment followed by an ASCT that was moved forward to avoid a new relapse.
I wrote about that experience here:
https://myelomabeacon.org/forum/extramedullary-disease-head-skull-t7993.html
https://myelomabeacon.org/forum/edap-regimen-multiple-myeloma-t8036.html
https://myelomabeacon.org/forum/mucositis-chemotherapy-multiple-myeloma-t8065.html
This treatment, plus melphalan soon after, was very hard on my sister. Unfortunately, her experience of the transplant is not smooth at this time and it is a very scary time indeed for us. So, I decided to write a more detailed account of her experience to have a better picture of what is going on and also to help others in a similar situation. I am also grateful to the support that we are getting on this forum.
Anyway, A received her transplant last Thursday, so she is now on Day +6. The transplant itself went well, but my sister’s body has been weakened by several rounds of very aggressive induction treatment and the EDAP she received after she relapsed. Her esophagus seems to be seriously damaged: she is in extreme pain, hardly able to take any liquids and absolutely unable to swallow any food. Drinking water is also very painful. She is now only sipping small amounts of kissel (which is a viscous fruit drink – the viscous consistency due to added potato starch is more soothing than other liquids). She is also receiving morphine infusion continuously. She is still in pain.
I wrote about it here:
https://myelomabeacon.org/forum/esophagus-pain-oral-fungal-infection-stem-cell-transplant-t8166.html
Today she developed fever 38.9C (102F). She has been on antibiotics from day 0, so they added more, and she is now on three different antibiotics + antifungals (she has candidiasis in her mouth as well). She also developed a rash that looks like hives and does not itch. I think it will take a miracle for her to bounce back from this. She is holding on. We do hope she can make it through. I will keep you posted.
Forums
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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
I have just spoken to my sister. She cannot sleep and called me because she is scared. She is in a lot of pain, but forced herself to drink some water. She also said that she thought her stool looked black. When we were speaking she struggled holding her phone and felt her hands were giving up. She asked me to tell her she was going to be OK. It was very painful and so hard to be far from her and not know how to help.
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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
Thinking of you and your sister at this difficult time.
Regards,
Dean
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
Re: A's Autologous Stem Cell Transplant in Russia
Thank you, Dean, It means a lot.
It's Day +7 for my sister. She is still holding on. The doctors describe her condition as critical, but stable. She is receiving morphine, dex, glucose, saline solution, three antibiotics, and an antifungal. She also received another blood transfusion today and tomorrow they are planning a platelet infusion. She was given oxygen to breathe today. Her fever went up to 39.6 C (103 F) at some point, but they managed to reduce it now to 38.2 C(101 F).
She has not been eating for several day, just sipping on kissel and water. She is given protein shakes, but cannot tolerate those, as they make her sick. She is getting glucose intravenously and says she actually has some energy.
The esophagus pain is the worst. It got a little better yesterday, but worsened today. However, there is some dynamics, as the pain now moved a bit higher into her thorax. There is definitely a bleeding there, as she coughs up some blood. She is receiving anti-ulcer drugs also. She has not had black stool since that one time and actually had some normal looking stool.
So, the bottom line is that she is still critical, but not worse that yesterday and there is still some hope that she will pull through.
The culture is very different in Russia and it is difficult to get any information from the doctors. They told A's husband yesterday not to come (he was sitting on the hospital couch for hours last night), as it makes her upset, and that we need to tell her jokes and cheer her up all the time and not show any concern.
It's Day +7 for my sister. She is still holding on. The doctors describe her condition as critical, but stable. She is receiving morphine, dex, glucose, saline solution, three antibiotics, and an antifungal. She also received another blood transfusion today and tomorrow they are planning a platelet infusion. She was given oxygen to breathe today. Her fever went up to 39.6 C (103 F) at some point, but they managed to reduce it now to 38.2 C(101 F).
She has not been eating for several day, just sipping on kissel and water. She is given protein shakes, but cannot tolerate those, as they make her sick. She is getting glucose intravenously and says she actually has some energy.
The esophagus pain is the worst. It got a little better yesterday, but worsened today. However, there is some dynamics, as the pain now moved a bit higher into her thorax. There is definitely a bleeding there, as she coughs up some blood. She is receiving anti-ulcer drugs also. She has not had black stool since that one time and actually had some normal looking stool.
So, the bottom line is that she is still critical, but not worse that yesterday and there is still some hope that she will pull through.
The culture is very different in Russia and it is difficult to get any information from the doctors. They told A's husband yesterday not to come (he was sitting on the hospital couch for hours last night), as it makes her upset, and that we need to tell her jokes and cheer her up all the time and not show any concern.
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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
I know it's hard for you to be so far away during this difficult time. Here's hoping the doctors allow her husband to be there as much as he's able (and as your sister wants / needs). And even more, hopes that she starts seeing improvement soon.
Thank you for the updates. Thoughts and prayers for you all.
Thank you for the updates. Thoughts and prayers for you all.
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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
Dear Gala,
I am so very sorry to read of your sister's continued suffering and struggles. Myeloma can be a very, very cruel disease. But, your sister sounds like a very strong person, and I pray that she can find her way out of the depths.
Thank you for sharing. Wishing healing and health for your sister and peace for you and your family.
Take care,
Karen
I am so very sorry to read of your sister's continued suffering and struggles. Myeloma can be a very, very cruel disease. But, your sister sounds like a very strong person, and I pray that she can find her way out of the depths.
Thank you for sharing. Wishing healing and health for your sister and peace for you and your family.
Take care,
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: A's Autologous Stem Cell Transplant in Russia
Moonscape and Karen, thank you so much for your support. It is very important for us to here these words.
It's Day +8 for my sister. She had some improvement yesterday when she managed to eat a couple of spoons of soup and to drink some water. Good news is that her temperature is back to normal. However, she is back to square one with her esophagus and throat today, very painful to swallow, coughing up a bit of blood, though her cough has reduced considerably. Even changing position causes severe pain, despite the morphine she is receiving continuously.
She has also developed some new symptoms: dark patches on her skin, darkened armpits and generally darker skin + more rash that does not itch.
She was examined by an intensive care specialist today and he stated that her liver and lungs are in OK state at the moment and that she does not yet require intensive care.
Yesterday she was a bit perked up, but today she is scared again that she might not make it. She is receiving a lot of supportive care and actually she started producing white blood cells. The count is 0.1 from 0.
She is receiving blood and platelets transfusions.
Another thing they are planning to do sounds a bit controversial and I'd appreciate some input. They want to give her medicine to stimulate white blood cells production, much like during stem cell mobilization, but milder. They are saying that they don't like to do it post transplant, but considering her condition, the little number of her own emerging cells may get too 'confused' about what they are supposed to 'repair' in her body and that they need some help at this point. Another patient in her unit, who has now improved and has been discharged, also received such treatment and did well. She had to stay in hospital for about 30 days till they were confident that her own blood cell production kicked in.
Any thoughts about this?
Anyway, my sister seems to get every possible rare complication. I do hope she is going to make it. Her case seems to be a bit different from others' that I am reading about, so if any of you heard of or had any of similar experiences, please share.
It's Day +8 for my sister. She had some improvement yesterday when she managed to eat a couple of spoons of soup and to drink some water. Good news is that her temperature is back to normal. However, she is back to square one with her esophagus and throat today, very painful to swallow, coughing up a bit of blood, though her cough has reduced considerably. Even changing position causes severe pain, despite the morphine she is receiving continuously.
She has also developed some new symptoms: dark patches on her skin, darkened armpits and generally darker skin + more rash that does not itch.
She was examined by an intensive care specialist today and he stated that her liver and lungs are in OK state at the moment and that she does not yet require intensive care.
Yesterday she was a bit perked up, but today she is scared again that she might not make it. She is receiving a lot of supportive care and actually she started producing white blood cells. The count is 0.1 from 0.
She is receiving blood and platelets transfusions.
Another thing they are planning to do sounds a bit controversial and I'd appreciate some input. They want to give her medicine to stimulate white blood cells production, much like during stem cell mobilization, but milder. They are saying that they don't like to do it post transplant, but considering her condition, the little number of her own emerging cells may get too 'confused' about what they are supposed to 'repair' in her body and that they need some help at this point. Another patient in her unit, who has now improved and has been discharged, also received such treatment and did well. She had to stay in hospital for about 30 days till they were confident that her own blood cell production kicked in.
Any thoughts about this?
Anyway, my sister seems to get every possible rare complication. I do hope she is going to make it. Her case seems to be a bit different from others' that I am reading about, so if any of you heard of or had any of similar experiences, please share.
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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
My sister is on Day +11 of her ASCT. She remains in critical condition. One of the symptoms, that are disturbing for her, is sudden loss of muscle tone in her hands and now also in her feet. It only lasts a moment and then comes back to normal. It's like a brief moment of extreme weakness when she can drop or almost drop a spoon or whatever she is holding or nearly fall is she is on her feet, because of no feeling in her foot, like it's giving up. She recovers from it almost instantaneously. Her hands also shake a lot.
We're wondering if it is peripheral neuropathy? It sounds a bit different from what I have read on this forum or elsewhere. I'm curious how common it is.
We're wondering if it is peripheral neuropathy? It sounds a bit different from what I have read on this forum or elsewhere. I'm curious how common it is.
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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 is day +11 still.
There is some news. The leukocytes went up to 1.0. This is good news, though it is difficult to say which part of that is her own body’s independent production as opposed the result of stimulation shots she has been getting. In any case, this is hoped to help with her oral and esophageal mucositis healing. As of now all her mucous membranes as well as her tongue remain completely destroyed. The doctor looked at her mouth and tongue and stated that there is no undamaged spot there. Same is assumed to be the case for deeper structures, i.e. esophagus, stomach and bowels.
She is standing strong, working hard to maintain oral and body hygiene, wiping herself with chlorhexidine and trying to drink fluids through a straw. She had been receiving continuous supply of trimeperidine (Promedol), which is an opioid analgesic, developed in the USSR in the 50s. It can be addictive, but is very effective and well tolerated. I am not sure if it is used in the USA or Western Europe, so here is some info:
https://www.unodc.org/unodc/en/data-and-analysis/bulletin/bulletin_1957-01-01_3_page006.html
https://en.wikipedia.org/wiki/Trimeperidine
It has been helpful and my sister finally managed to get some sleep and drink a bit more liquids. However, later today they decided to discontinue painkillers and some other medication in order to see how her body would function on its own. They also lifted some restriction on the sterile regime in her room.
Unfortunately, she could not really cope with the pain overnight and had to request more pain relief. Otherwise, her symptoms remain stable, at least not getting worse. Besides mucositis, the possible neuropathy issue remains a worry. She had a neurologist consultation and the neurological examination did not reveal anything major. Important is that she still has feeling in both her hands and feet. It’s just this momentary loss of muscle tone and weakness that makes it unsafe to walk or hold something heavy or hot. She needs to be very careful. She also cannot support herself with her arms/hands, as they start shaking when leaned upon.
Another symptom that does not seem to be improving is rash. There are three skin manifestations: hives-looking rash (quite severe, covering large areas, but not itchy), hemorrhagic rash on her legs and darkening of skin in the armpits and groin (the latter will never go away, according to doctors).
Today we were joking that with all things that are thrown at her it feels like she has been run over by a steamroller, but, like in a cartoon, she still jumps up and runs around (though looking a bit flat). So, we still can joke, but not too much, as it is painful for her to laugh.
I love my beautiful and brave sister very much and so want her to get better and live. I hope she does.
There is some news. The leukocytes went up to 1.0. This is good news, though it is difficult to say which part of that is her own body’s independent production as opposed the result of stimulation shots she has been getting. In any case, this is hoped to help with her oral and esophageal mucositis healing. As of now all her mucous membranes as well as her tongue remain completely destroyed. The doctor looked at her mouth and tongue and stated that there is no undamaged spot there. Same is assumed to be the case for deeper structures, i.e. esophagus, stomach and bowels.
She is standing strong, working hard to maintain oral and body hygiene, wiping herself with chlorhexidine and trying to drink fluids through a straw. She had been receiving continuous supply of trimeperidine (Promedol), which is an opioid analgesic, developed in the USSR in the 50s. It can be addictive, but is very effective and well tolerated. I am not sure if it is used in the USA or Western Europe, so here is some info:
https://www.unodc.org/unodc/en/data-and-analysis/bulletin/bulletin_1957-01-01_3_page006.html
https://en.wikipedia.org/wiki/Trimeperidine
It has been helpful and my sister finally managed to get some sleep and drink a bit more liquids. However, later today they decided to discontinue painkillers and some other medication in order to see how her body would function on its own. They also lifted some restriction on the sterile regime in her room.
Unfortunately, she could not really cope with the pain overnight and had to request more pain relief. Otherwise, her symptoms remain stable, at least not getting worse. Besides mucositis, the possible neuropathy issue remains a worry. She had a neurologist consultation and the neurological examination did not reveal anything major. Important is that she still has feeling in both her hands and feet. It’s just this momentary loss of muscle tone and weakness that makes it unsafe to walk or hold something heavy or hot. She needs to be very careful. She also cannot support herself with her arms/hands, as they start shaking when leaned upon.
Another symptom that does not seem to be improving is rash. There are three skin manifestations: hives-looking rash (quite severe, covering large areas, but not itchy), hemorrhagic rash on her legs and darkening of skin in the armpits and groin (the latter will never go away, according to doctors).
Today we were joking that with all things that are thrown at her it feels like she has been run over by a steamroller, but, like in a cartoon, she still jumps up and runs around (though looking a bit flat). So, we still can joke, but not too much, as it is painful for her to laugh.
I love my beautiful and brave sister very much and so want her to get better and live. I hope she does.
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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 +14
My sister's immune system is up: WBC 3.4, hemoglobin 80g/l, platelets 34.
She still is struggling eating. The pain is slightly reduced, but the food tastes terrible and also she seems to have 'forgotten' how to swallow and process food, as swallowing seems to be difficult, though it is hard to determine the reason. She just struggles to get it down. Any slightly higher amount of food or drink, than a couple of tea spoons, causes throwing up. She is still being fed via IV to provide her with nutrients.
She is also extremely weak and sleepy all the time and has now developed another type of rash on her hands that has a crusty appearance.
The weakness in her hands/arms and feet/legs is still happening, so the doctors are going to investigate by getting her to walk in the hospital corridor wearing a mask, to see if she can walk a longer distance. They are not sure if those symptoms are due to general weakness from lack of nutrition and long stay in the hospital or if it is neuropathy. At this point they do not know.
They are saying that they might release her before the New Year. It depends on the course of her recovery process.
My sister's immune system is up: WBC 3.4, hemoglobin 80g/l, platelets 34.
She still is struggling eating. The pain is slightly reduced, but the food tastes terrible and also she seems to have 'forgotten' how to swallow and process food, as swallowing seems to be difficult, though it is hard to determine the reason. She just struggles to get it down. Any slightly higher amount of food or drink, than a couple of tea spoons, causes throwing up. She is still being fed via IV to provide her with nutrients.
She is also extremely weak and sleepy all the time and has now developed another type of rash on her hands that has a crusty appearance.
The weakness in her hands/arms and feet/legs is still happening, so the doctors are going to investigate by getting her to walk in the hospital corridor wearing a mask, to see if she can walk a longer distance. They are not sure if those symptoms are due to general weakness from lack of nutrition and long stay in the hospital or if it is neuropathy. At this point they do not know.
They are saying that they might release her before the New Year. It depends on the course of her recovery process.
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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
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