So pleased for you all.
Nice for you all to see light at the end of the tunnel.
Good luck,
Dean
Forums
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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
Hello Gala,
I was wondering this morning how your sister might be doing. I hope she is well and recovering quickly at home from the transplant and treatment she had prior to the transplant.
Best wishes.
I was wondering this morning how your sister might be doing. I hope she is well and recovering quickly at home from the transplant and treatment she had prior to the transplant.
Best wishes.
-
JimNY
Re: A's Autologous Stem Cell Transplant in Russia
Dean and JimNY - Thank you very much for your support. We really need and appreciate it. I’ll write an update about my sister’s progress below.
Tanja - Thank you for sharing you mother’s story. I hope she is doing well and that maybe some changes in her treatment plan may bring relief from side effects and also keep multiple myeloma at bay. I can see you are also grieving after your father’s death. It must be really hard for you both. Please accept my sincere condolences.
It sounds like you are also living abroad and do not get to see you family in Russia very often. From my experience, it is much harder to try and support your family member from far away. It’s a very helpless feeling. But you are right that now with the help of technology we can still keep in touch with our loved ones and be there for them at least virtually. It was great to read about someone in Russia going through myeloma treatments and if you choose to share more, I’ll be following your mother’s progress.
It’s Day +47. My sister is recovering at home. The recovery process is slow, but she can now eat and has appetite and more energy. Her issues now are: gastrointestinal (stomach pain, heartburn, nausea), swollen ankles, fatigue, and it looks like her fungal infection might be coming back, because some symptoms in the throat and esophagus are returning after being absent for some time (she had severe mucositis in hospital, accompanied by a severe fungal infection, which resolved eventually, but now may be rearing its ugly face again).
She has been prescribed Revlimid maintenance 25 mg (no dexamethasone), which she started a couple of days ago. We are wondering if that could trigger return of the fungal infection. Swallowing her tablets is a challenge, them being quite large.
She is also taking acyclovir to prevent viral infections. She is supposed to take those for a year.
She keeps a positive attitude, but sometimes gets quite frustrated by the slow pace of her recovery and the setbacks.
Once again, thank you for your comments, and I wish you all the best of health.
Tanja - Thank you for sharing you mother’s story. I hope she is doing well and that maybe some changes in her treatment plan may bring relief from side effects and also keep multiple myeloma at bay. I can see you are also grieving after your father’s death. It must be really hard for you both. Please accept my sincere condolences.
It sounds like you are also living abroad and do not get to see you family in Russia very often. From my experience, it is much harder to try and support your family member from far away. It’s a very helpless feeling. But you are right that now with the help of technology we can still keep in touch with our loved ones and be there for them at least virtually. It was great to read about someone in Russia going through myeloma treatments and if you choose to share more, I’ll be following your mother’s progress.
It’s Day +47. My sister is recovering at home. The recovery process is slow, but she can now eat and has appetite and more energy. Her issues now are: gastrointestinal (stomach pain, heartburn, nausea), swollen ankles, fatigue, and it looks like her fungal infection might be coming back, because some symptoms in the throat and esophagus are returning after being absent for some time (she had severe mucositis in hospital, accompanied by a severe fungal infection, which resolved eventually, but now may be rearing its ugly face again).
She has been prescribed Revlimid maintenance 25 mg (no dexamethasone), which she started a couple of days ago. We are wondering if that could trigger return of the fungal infection. Swallowing her tablets is a challenge, them being quite large.
She is also taking acyclovir to prevent viral infections. She is supposed to take those for a year.
She keeps a positive attitude, but sometimes gets quite frustrated by the slow pace of her recovery and the setbacks.
Once again, thank you for your comments, and I wish you all the best of health.
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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 +56.
A’s condition is stable, not much change. She has fatigue and a lot of gastrointestinal issues. Also, swollen ankles and returning peripheral neuropathy (she had it after Velcade, but the condition was improved after she stopped Velcade and was treated for neuropathy at the hospital). We think Revlimid may now be the culprit. She is generally optimistic with some days when she feels hopeless and scared.
I have a video link with her and must say that she looks very ill compared to any time before the transplant. Even after several rounds of higher than standard doses of chemo (her induction was pretty aggressive as well as EDAP that she received after she relapsed with multiple cutaneous plasmacytomas), she still looked healthy. The only sign of chemo was her missing hair. Now you can tell she is seriously ill, she is very pale with dark circles under the eyes. Also, her skin turned almost black especially around the mouth. It looks like dirt, but does not come off. I wonder what that might be and whether that is going to go away.
On the bright side, she is stable and does not seem to get worse. She also is able to do some simple things around the house and to cook. She is interested in reading again. So, we are still hoping for the best.
Something that I find strange is that after A was discharged from the hospital she seems to be left on her own. She was discharged to the care of her hematologist-oncologist, but her next planned appointment is at about 90 days or so and she was advised just to see her GP (PCP) in the meantime for any health issues. The GP, however, was not confident enough to deal with her swollen ankles and stomach pains, because of her multiple myeloma, so told her to see her oncologist instead.
Also, she was not given any advice about the diet or infection prevention measures post-transplant. This forum is a very helpful resource for us, because I was able to share with A the advice given here with regards to post-transplant care at home.
Thanks again, everyone, for sharing your experience.
A’s condition is stable, not much change. She has fatigue and a lot of gastrointestinal issues. Also, swollen ankles and returning peripheral neuropathy (she had it after Velcade, but the condition was improved after she stopped Velcade and was treated for neuropathy at the hospital). We think Revlimid may now be the culprit. She is generally optimistic with some days when she feels hopeless and scared.
I have a video link with her and must say that she looks very ill compared to any time before the transplant. Even after several rounds of higher than standard doses of chemo (her induction was pretty aggressive as well as EDAP that she received after she relapsed with multiple cutaneous plasmacytomas), she still looked healthy. The only sign of chemo was her missing hair. Now you can tell she is seriously ill, she is very pale with dark circles under the eyes. Also, her skin turned almost black especially around the mouth. It looks like dirt, but does not come off. I wonder what that might be and whether that is going to go away.
On the bright side, she is stable and does not seem to get worse. She also is able to do some simple things around the house and to cook. She is interested in reading again. So, we are still hoping for the best.
Something that I find strange is that after A was discharged from the hospital she seems to be left on her own. She was discharged to the care of her hematologist-oncologist, but her next planned appointment is at about 90 days or so and she was advised just to see her GP (PCP) in the meantime for any health issues. The GP, however, was not confident enough to deal with her swollen ankles and stomach pains, because of her multiple myeloma, so told her to see her oncologist instead.
Also, she was not given any advice about the diet or infection prevention measures post-transplant. This forum is a very helpful resource for us, because I was able to share with A the advice given here with regards to post-transplant care at home.
Thanks again, everyone, for sharing your experience.
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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 +67
Just an update.
A completed her first round of Revlimid maintenance. She is taking a 25 mg dose. The worst part of it was severe gastrointestinal pain every afternoon and evening. As soon as she stopped Revlimid, the pain also stopped, so A strongly associates the pain with the drug.
She saw her oncologist today, It was a planned appointment to review her maintenance. It turned out that her white cells dropped dangerously low while on Revlimid, so she was instructed to wait for a couple of days more before starting a new round, in the hope to gain higher WBC count. The doctor does not want to reduce her dose just yet.
Otherwise, A feels stronger, with more energy. She continues doing things around the house and goes for walks in the park with either her son or her husband, weather permitting. It's very frosty now where she lives (-25 C / -13 F).
Sometimes she feels very fatigued, but not all the time. Her hair has started to grow.
Just an update.
A completed her first round of Revlimid maintenance. She is taking a 25 mg dose. The worst part of it was severe gastrointestinal pain every afternoon and evening. As soon as she stopped Revlimid, the pain also stopped, so A strongly associates the pain with the drug.
She saw her oncologist today, It was a planned appointment to review her maintenance. It turned out that her white cells dropped dangerously low while on Revlimid, so she was instructed to wait for a couple of days more before starting a new round, in the hope to gain higher WBC count. The doctor does not want to reduce her dose just yet.
Otherwise, A feels stronger, with more energy. She continues doing things around the house and goes for walks in the park with either her son or her husband, weather permitting. It's very frosty now where she lives (-25 C / -13 F).
Sometimes she feels very fatigued, but not all the time. Her hair has started to grow.
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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
This will be the last update for this thread. It's now past Day +100 and, unfortunately, things have taken a very unfortunate turn.
Though my sister's blood work showed remission and 0 M-spike, she has developed a new plasmacytoma on the scar tissue of her port. It is growing fast. Because of very low WBC counts, the doctors are against aggressive chemo, but they think the prognosis now is grim.
She has been referred for radiation therapy for her plasmacytoma with a palliative dose to follow with a maintenance dose Revlimid. At the moment we do not know how long she has left and what is going to happen next.
Feeling scared.
Though my sister's blood work showed remission and 0 M-spike, she has developed a new plasmacytoma on the scar tissue of her port. It is growing fast. Because of very low WBC counts, the doctors are against aggressive chemo, but they think the prognosis now is grim.
She has been referred for radiation therapy for her plasmacytoma with a palliative dose to follow with a maintenance dose Revlimid. At the moment we do not know how long she has left and what is going to happen next.
Feeling scared.
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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, I am so very sorry at this news. Thinking of you and your sister during these tough days, and know it must be difficult to be so far away from her. Here's hoping radiation is able to control the plasmacytoma.
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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
So sorry to hear this. Your love for her comes through in your posts, and we are thinking of you as you deal with her facing this new obstacle.
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mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: A's Autologous Stem Cell Transplant in Russia
Dear Gala,
I am so sorry to hear about your sister's situation. You are in my thought and prayers. I hope she respond well to the treatment.
All the best,
Betsy
I am so sorry to hear about your sister's situation. You are in my thought and prayers. I hope she respond well to the treatment.
All the best,
Betsy
Re: A's Autologous Stem Cell Transplant in Russia
Dear Gala,
I’m so sorry to hear of your sister’s setback. I do hope she responds well to the radiation therapy, and is able to get her recovery back on track. Thinking of you with best wishes.
Karen
I’m so sorry to hear of your sister’s setback. I do hope she responds well to the radiation therapy, and is able to get her recovery back on track. Thinking of you with best wishes.
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
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