@gmal261 My goodness, you’ve had more than your share of medical drama over the years! I’m so happy to see you’re in remission with no evidence of disease! I was just talking with another member how we really relish hearing “you’re unremarkable” from our doctors! Congratulations on the remission!
Can you tell me a little more about your stem cell transplant? I’m expecting you had an Allogenic transplant using cells for a donor? Does your doctor feel the rheumatoid arthritis is connected to any graft vs host disease?
Thank you! My stem cell transplant was autologous. I was nauseated during the process and had the diarrhea from the strong chemotherapy they used to remove my previous immune system. I went down to zero and was very lethargic as well. But I kept walking and eating very nutritious foods and that helped tremendously. I now also have rheumatoid arthritis and I am back on a small, weekly injection of Methotrexate to help with my RA. The Methotrexate makes me nauseated so I take Zofran to try and counteract that medication side effect. I have had RA flares and have had to ramp up on Prednisone and then ramp down. That helped my flare but also made me very hungry at the same time as it increases your appetite.
I am so very thankful for my medical team! They have been awesome! I am very fortunate!
Thank you! My stem cell transplant was autologous. I was nauseated during the process and had the diarrhea from the strong chemotherapy they used to remove my previous immune system. I went down to zero and was very lethargic as well. But I kept walking and eating very nutritious foods and that helped tremendously. I now also have rheumatoid arthritis and I am back on a small, weekly injection of Methotrexate to help with my RA. The Methotrexate makes me nauseated so I take Zofran to try and counteract that medication side effect. I have had RA flares and have had to ramp up on Prednisone and then ramp down. That helped my flare but also made me very hungry at the same time as it increases your appetite.
I am so very thankful for my medical team! They have been awesome! I am very fortunate!
I wasn’t sure if it was an auto or allo transplant…with the auto you didn’t have to be concerned with gvhd so that’s great! I’m happy to hear you’re doing well now! Unfortunately that nausea and sometimes diarrhea are the initial side effects from the chemo but then it passes and phfew, life gets better…except for your RA. 🙃
Is there anything predictable about the flares that you can associate such as stress, foods, etc?
I wasn’t sure if it was an auto or allo transplant…with the auto you didn’t have to be concerned with gvhd so that’s great! I’m happy to hear you’re doing well now! Unfortunately that nausea and sometimes diarrhea are the initial side effects from the chemo but then it passes and phfew, life gets better…except for your RA. 🙃
Is there anything predictable about the flares that you can associate such as stress, foods, etc?
For me there has not been anything that is associated with my RA flares. The flares get so bad, at times, I can hardly walk. I am attempting safe movement but it will be better when I get my walker. I will be more stable.
My wife(75 years) was diagnosed CNS lymphoma 2.5 years ago and treated with M-RVP plus Cytarabine as consolation. As per last week’s brain MRI she is Ned.
However her recent CBC showed anemia and low platelets and high RDW.
Can it be MDS or secondary AML caused by the chemotherapy?
Symptoms: easy bruising and fatigue/weakness after walking for 15 minutes
My wife(75 years) was diagnosed CNS lymphoma 2.5 years ago and treated with M-RVP plus Cytarabine as consolation. As per last week’s brain MRI she is Ned.
However her recent CBC showed anemia and low platelets and high RDW.
Can it be MDS or secondary AML caused by the chemotherapy?
Symptoms: easy bruising and fatigue/weakness after walking for 15 minutes
Hi @kippi1950, while a number of us have been through blood cancers and treatments we really can’t diagnosis conditions and speculating often just leads to unnecessary stress and worry. So the best answer will come from your wife’s hematologist oncologist. I know it’s frightening when you see changes in blood work after having gone through so much already.
Did you see her results online first and waiting for a followup from her doctor?
Hi @kippi1950, while a number of us have been through blood cancers and treatments we really can’t diagnosis conditions and speculating often just leads to unnecessary stress and worry. So the best answer will come from your wife’s hematologist oncologist. I know it’s frightening when you see changes in blood work after having gone through so much already.
Did you see her results online first and waiting for a followup from her doctor?
Yes, we will have an appointment on July 26th and another blood draw before that.
I follow the blood disorder communication: a diagnosis is seemingly hard to get. Just take smoldering Multiple Myeloma or MGUS.
Our provider (website) says they treat 125 MDS patients every year and point to chemotherapy as a reason for increasing case numbers found nowadays because patients survive longer at old age.
Overall , they are not very good talking about side effects .
It was our local GI who helped us through our difficult post Chemotherapy time.
That’s why I was looking for patients/caregivers with MDS experience (no cure, blood transfusions, severe weakness, short survival period)
Yes, we will have an appointment on July 26th and another blood draw before that.
I follow the blood disorder communication: a diagnosis is seemingly hard to get. Just take smoldering Multiple Myeloma or MGUS.
Our provider (website) says they treat 125 MDS patients every year and point to chemotherapy as a reason for increasing case numbers found nowadays because patients survive longer at old age.
Overall , they are not very good talking about side effects .
It was our local GI who helped us through our difficult post Chemotherapy time.
That’s why I was looking for patients/caregivers with MDS experience (no cure, blood transfusions, severe weakness, short survival period)
Hi @kippi1950, I found several discussion in Connect with members who have MDS or loved ones with the condition.
I’m posting a few below for you. There are conversations as well. You can find those by typing in MDS in the top search bar. There will be a list of related discussion for you.
The first site is an article about MDS posted Hematology that you might find helpful.
~Myelodysplastic Syndromes Treatment: Past, present and goals for the future
It’s understandable to be concerned about the possibility of developing another health condition such as MDS or AML years after treatments with chemotherapy. We’ll be optimistic that this isn’t what your wife is dealing with. Please let me know what you find out with her next appointment. Wishing her (and you) only good news.
Hi @kippi1950, I found several discussion in Connect with members who have MDS or loved ones with the condition.
I’m posting a few below for you. There are conversations as well. You can find those by typing in MDS in the top search bar. There will be a list of related discussion for you.
The first site is an article about MDS posted Hematology that you might find helpful.
~Myelodysplastic Syndromes Treatment: Past, present and goals for the future
It’s understandable to be concerned about the possibility of developing another health condition such as MDS or AML years after treatments with chemotherapy. We’ll be optimistic that this isn’t what your wife is dealing with. Please let me know what you find out with her next appointment. Wishing her (and you) only good news.
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Thank you! My stem cell transplant was autologous. I was nauseated during the process and had the diarrhea from the strong chemotherapy they used to remove my previous immune system. I went down to zero and was very lethargic as well. But I kept walking and eating very nutritious foods and that helped tremendously. I now also have rheumatoid arthritis and I am back on a small, weekly injection of Methotrexate to help with my RA. The Methotrexate makes me nauseated so I take Zofran to try and counteract that medication side effect. I have had RA flares and have had to ramp up on Prednisone and then ramp down. That helped my flare but also made me very hungry at the same time as it increases your appetite.
I am so very thankful for my medical team! They have been awesome! I am very fortunate!
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Like -
Helpful -
Hug
1 ReactionI wasn’t sure if it was an auto or allo transplant…with the auto you didn’t have to be concerned with gvhd so that’s great! I’m happy to hear you’re doing well now! Unfortunately that nausea and sometimes diarrhea are the initial side effects from the chemo but then it passes and phfew, life gets better…except for your RA. 🙃
Is there anything predictable about the flares that you can associate such as stress, foods, etc?
-
Like -
Helpful -
Hug
2 ReactionsFor me there has not been anything that is associated with my RA flares. The flares get so bad, at times, I can hardly walk. I am attempting safe movement but it will be better when I get my walker. I will be more stable.
-
Like -
Helpful -
Hug
3 ReactionsMy wife(75 years) was diagnosed CNS lymphoma 2.5 years ago and treated with M-RVP plus Cytarabine as consolation. As per last week’s brain MRI she is Ned.
However her recent CBC showed anemia and low platelets and high RDW.
Can it be MDS or secondary AML caused by the chemotherapy?
Symptoms: easy bruising and fatigue/weakness after walking for 15 minutes
-
Like -
Helpful -
Hug
1 ReactionHi @kippi1950, while a number of us have been through blood cancers and treatments we really can’t diagnosis conditions and speculating often just leads to unnecessary stress and worry. So the best answer will come from your wife’s hematologist oncologist. I know it’s frightening when you see changes in blood work after having gone through so much already.
Did you see her results online first and waiting for a followup from her doctor?
-
Like -
Helpful -
Hug
1 ReactionYes, we will have an appointment on July 26th and another blood draw before that.
I follow the blood disorder communication: a diagnosis is seemingly hard to get. Just take smoldering Multiple Myeloma or MGUS.
Our provider (website) says they treat 125 MDS patients every year and point to chemotherapy as a reason for increasing case numbers found nowadays because patients survive longer at old age.
Overall , they are not very good talking about side effects .
It was our local GI who helped us through our difficult post Chemotherapy time.
That’s why I was looking for patients/caregivers with MDS experience (no cure, blood transfusions, severe weakness, short survival period)
-
Like -
Helpful -
Hug
1 ReactionHi @kippi1950, I found several discussion in Connect with members who have MDS or loved ones with the condition.
I’m posting a few below for you. There are conversations as well. You can find those by typing in MDS in the top search bar. There will be a list of related discussion for you.
The first site is an article about MDS posted Hematology that you might find helpful.
~Myelodysplastic Syndromes Treatment: Past, present and goals for the future
https://connect.mayoclinic.org/blog/hematology/newsfeed-post/myelodysplastic-syndromes-treatment-past-present-and-goals-for-the-future/~Myelodysplastic syndromes (MDS): When do you need to start treatment? (With members @corvairfan @tyson1221 and others)
https://connect.mayoclinic.org/discussion/mds-2/
~~~~~~
Myelodysplastic Syndrome (MDS) with members @kjjjrader @jimbond48 @ davidkreuser and others
https://connect.mayoclinic.org/discussion/myelodysplastic-syndrome-mds-1/
It’s understandable to be concerned about the possibility of developing another health condition such as MDS or AML years after treatments with chemotherapy. We’ll be optimistic that this isn’t what your wife is dealing with. Please let me know what you find out with her next appointment. Wishing her (and you) only good news.
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Like -
Helpful -
Hug
4 ReactionsThat’s wat happen to me I had chemo in 2015 an got my MDs 6 months ago ahhhh
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1 ReactionHow was your MDS diagnosed?
Any CBC indicators? What symptoms did you experience?
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1 ReactionYearly blood test an had pancytopenia rbc wbc hgb an platelets very low an continue low an having to get frequent transfusions