Hi everyone,
My sister has just received her stem cell transplant. As of Day +3 she was experiencing severe pain in the esophagus, which causes difficulty swallowing even water, let alone food or tablets that she needs to take. She describes it as feeling extreme burning and sense of something stuck there, like an obstruction. She also has a very bad heartburn that is not much helped my medication.
On top of that she has severe fungal infection in the mouth. Again, the meds are not really helping.
I did not find a similar side effect presentation here on the forum. My sister was told this is common.
Any input would be appreciated.
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: Esophagus pain & oral fungal infection post transplant
Hi Gala,
My throat and mouth were very painful also during the stem cell transplant. I described it more like swallowing razor blades or glass shards. Very sore.
What helped for me was getting a cup full of ice and filling it with my protein shakes that I was given, making them ice cold. The first few swallows hurt like hell. Once the coolness got to my throat, I found relief in the cooling.
I know it hurts, but if she can sip as often as possible ice cold liquids, it should give her some relief. Failing that, tell her to ask for drugs. I was offered morphine. Which I didn't take as I hallucinate on the stuff. I was able to swallow tablets when my throat was cooled down.
My throat and mouth were very painful also during the stem cell transplant. I described it more like swallowing razor blades or glass shards. Very sore.
What helped for me was getting a cup full of ice and filling it with my protein shakes that I was given, making them ice cold. The first few swallows hurt like hell. Once the coolness got to my throat, I found relief in the cooling.
I know it hurts, but if she can sip as often as possible ice cold liquids, it should give her some relief. Failing that, tell her to ask for drugs. I was offered morphine. Which I didn't take as I hallucinate on the stuff. I was able to swallow tablets when my throat was cooled down.
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Esophagus pain & oral fungal infection post transplant
The esophagus pain sounds like a result of mucositis. That can be a side effect of high-dose melphalan when steps haven't been taken -- like chewing on ice during administration of the melphalan -- to avoid the mucositis. It's probably even more likely in your sister's case, given that she experienced mucositis from her intensive chemotherapy regimen prior to the transplant.
The oral fungal infection sounds like oral thrush, or oral candidiasis. I believe this type of infection is more likely when mucositis occurs.
The oral fungal infection sounds like oral thrush, or oral candidiasis. I believe this type of infection is more likely when mucositis occurs.
Re: Esophagus pain & oral fungal infection post transplant
vicstir and TerryH,
Thank you for your replies. Yes, it must be mucositis and candidiasis. My worry is whether the esophagus will repair and even whether she is going to get through this. Today she was struggling talking to me. She is on Day +5 now, still long to go.
Unfortunately, she is in a hospital where they do not practice giving people ice to chew or even ice-cold drinks. She herself does not have access to a fridge. I will try and make some arrangements or get her husband to make some (I am in another country).
She is now receiving all her medication and food through an IV. She also received a blood transfusion and tomorrow she is getting a platelet transfusion. She has received morphine, but it only helped very marginally. She has good tolerance to pain, but was rolling in her bed begging the doctors to do anything to stop it. They said they had nothing stronger than what they had given her and that hopefully the drugs would have a cumulative effect and she would feel less pain soon.
Also, when she lies down, some white foam comes out of her mouth, so she has to sleep in a seating position.
He nurse commented that 'not everyone is suffering like <her>' and that after two days of not seeing her she cannot recognize her.
The doctor, however, does not seem to be too concerned about the eventual outcome. I do hope she can recover from this.
Thank you for your replies. Yes, it must be mucositis and candidiasis. My worry is whether the esophagus will repair and even whether she is going to get through this. Today she was struggling talking to me. She is on Day +5 now, still long to go.
Unfortunately, she is in a hospital where they do not practice giving people ice to chew or even ice-cold drinks. She herself does not have access to a fridge. I will try and make some arrangements or get her husband to make some (I am in another country).
She is now receiving all her medication and food through an IV. She also received a blood transfusion and tomorrow she is getting a platelet transfusion. She has received morphine, but it only helped very marginally. She has good tolerance to pain, but was rolling in her bed begging the doctors to do anything to stop it. They said they had nothing stronger than what they had given her and that hopefully the drugs would have a cumulative effect and she would feel less pain soon.
Also, when she lies down, some white foam comes out of her mouth, so she has to sleep in a seating position.
He nurse commented that 'not everyone is suffering like <her>' and that after two days of not seeing her she cannot recognize her.
The doctor, however, does not seem to be too concerned about the eventual outcome. I do hope she can recover from this.
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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: Esophagus pain & oral fungal infection post transplant
I also had the horrible pain in the mouth and esophagus following my transplant. I didn't know about chewing on ice before, during and after the melphalan infusion at the time. Medications didn't seem to help me either, I was given saline to gargle, a numbing mouth wash and some other things to help, but they didn't, It did gradually get better. In addition to the pain I also developed nausea that lasted quite a long time, about 10 weeks. I didn't develop the oral fungus, thrush, because I was on antifungals the whole time.
The things that I could manage to swallow and keep down most of the time, even with the pain, were: yogurt, tea, broth, water and ice cream. Anything with texture to it was agony and wouldn't stay down anyway.
All the best to your sister. She is still very soon after the transplant. Things will get a little worse and then they will get better fairly quickly as the stem cells begin to do their work.
Nancy in Phila
The things that I could manage to swallow and keep down most of the time, even with the pain, were: yogurt, tea, broth, water and ice cream. Anything with texture to it was agony and wouldn't stay down anyway.
All the best to your sister. She is still very soon after the transplant. Things will get a little worse and then they will get better fairly quickly as the stem cells begin to do their work.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Esophagus pain & oral fungal infection post transplant
Even though I chewed on ice for hours, I still had a really sore throat for several days following the transplant. This lasted for a few days, and I recall taking Tylenol to ease that pain. I was given an anti-fungal medication (can't remember the name of it!) and had to brush my teeth with a foam brush!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Esophagus pain & oral fungal infection post transplant
Nancy, thank you for your input. It is good to compare notes and know you are not alone.
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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: Esophagus pain & oral fungal infection post transplant
Vicstir and Nancy,
Do you remember how long your symptoms lasted? My sister's condition remains stable, but critical. There has been no change since I last posted here. In a way, it is a good thing, because she is not getting worse, but it wears her off, so some positive dynamics would be good.
I have found some literature on esophagus-related complications post transplant, which could be useful to post here for future reference:
Esophageal intramucosal hematoma after peripheral blood stem cell transplantation: case report and review of literature:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4069927/
Gastrointestinal and hepatic complications of hematopoietic stem cell transplantation:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3337559/
Do you remember how long your symptoms lasted? My sister's condition remains stable, but critical. There has been no change since I last posted here. In a way, it is a good thing, because she is not getting worse, but it wears her off, so some positive dynamics would be good.
I have found some literature on esophagus-related complications post transplant, which could be useful to post here for future reference:
Esophageal intramucosal hematoma after peripheral blood stem cell transplantation: case report and review of literature:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4069927/
Gastrointestinal and hepatic complications of hematopoietic stem cell transplantation:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3337559/
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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: Esophagus pain & oral fungal infection post transplant
Hello Gala,
You and your sister have my sympathies, going thru the problems of a transplant. My sore throat lasted only a few days but was miserable at the time. I also had problems with eating, since I lost my appetite, and also my sense of smell got very distorted for awhile. It was a strange time, but I was able to eat BRAT foods (bananas, rice, apple sauce, toast), i.e. mild foods.
The nurses would weigh me, take my blood pressure, pulse, get the blood counts, as an outpatient. My blood pressure went up higher than normal too. I got re-admitted to hospital for a fever and tested for an infection. But eventually I got back to normal. It meant a lot to me to have the support of family and friends.
Best wishes to you both!
You and your sister have my sympathies, going thru the problems of a transplant. My sore throat lasted only a few days but was miserable at the time. I also had problems with eating, since I lost my appetite, and also my sense of smell got very distorted for awhile. It was a strange time, but I was able to eat BRAT foods (bananas, rice, apple sauce, toast), i.e. mild foods.
The nurses would weigh me, take my blood pressure, pulse, get the blood counts, as an outpatient. My blood pressure went up higher than normal too. I got re-admitted to hospital for a fever and tested for an infection. But eventually I got back to normal. It meant a lot to me to have the support of family and friends.
Best wishes to you both!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Esophagus pain & oral fungal infection post transplant
Nancy, thank you very much for replying. Of course, everyone's experience is different, and it's good to know that you got back to normal after experiencing a number of side effects from your treatment. Yes, friends and family, as well as this forum, are a tremendous 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
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