I will add I am day 14 after transplant. Nausea control is my biggest issue. I am in a research test to prevent GVHD. I did not realize I would have 2 additional chemos. I thought the chemo on my plan was pills. There are pills after the chemo for 65 days.
Wow. I am still hospitalized till the 6th of May.
Eating? No so much. I would say I am glad i did it, not sure I would do another
Hi @katgob, I’ve been thinking about you. The first couple weeks are the roughest! You’re in the thick of it right now and unfortunately, nausea might be your companion for a bit yet. At day 14 you are in the zone for your new stem cells to start engrafting. So you should start seeing an increase in your blood cell production pretty soon. When that happens, your energy will begin to return slowly and you’ll be feel incrementally better daily! Keeping in mind this is a marathon, not a race! 😉. Recovery will take a few months before you start feeling ‘normal’…
Eating can be a challenge. Nibble on little snacks of whatever appeals to you. Since you’re in the hospital it’s difficult to get what you want. But generally a transplant unit has a fridge stocked with sandwiches, pudding, protein drinks, cheese sticks, yogurt. While protein intake is important, for a short period until I gained some weight, my dietician was more concerned about getting calories into me, no matter the source. Desperate for something to eat, my husband found Lactaid (lactose free) Ice cream that became my sole source of food some days. He’d make me smoothies with the ice cream as a base. Hang in there! This will get better! Air hug!!
I have been dealing with the neuroendocrine for a year and a half...stable
Just found out about the MDS and am praying there is some change of treatment to control that too!
I was diagnosed with MDS - MLD (Multi-lineage dysplasia) by BMB in 2020, but 2 other hospitals looked at my previous BMB from 2017 and said MDS was already present then. All 3 of my lines are low, with platelets and WBC being the most concerning. I have been on watch and wait since diagnosis, usually being seen every three months. There have been a few times (now being one of them) that my neutrophils dipped low enough that he preferred to only go 2 months between appointments. I am one of the lucky ones - I have no symptoms yet, and I thank God for that. My Dr. said if my neutrophils have dropped again at my next appointment, he'll want to do another BMB to see if anything is going on (increased blasts, new mutations, etc.)
If you don't have any other symptoms and your platelets are not dangerously low, I suspect you will end up in a watch and wait situation. It must be difficult to have to face this when you're already dealing with another cancer.
I can't verify, but I have read that red wine reduces platelets. Also, I see a naturopath, and one comment he made is that sesame oil may support platelets.
I was diagnosed with MDS - MLD (Multi-lineage dysplasia) by BMB in 2020, but 2 other hospitals looked at my previous BMB from 2017 and said MDS was already present then. All 3 of my lines are low, with platelets and WBC being the most concerning. I have been on watch and wait since diagnosis, usually being seen every three months. There have been a few times (now being one of them) that my neutrophils dipped low enough that he preferred to only go 2 months between appointments. I am one of the lucky ones - I have no symptoms yet, and I thank God for that. My Dr. said if my neutrophils have dropped again at my next appointment, he'll want to do another BMB to see if anything is going on (increased blasts, new mutations, etc.)
If you don't have any other symptoms and your platelets are not dangerously low, I suspect you will end up in a watch and wait situation. It must be difficult to have to face this when you're already dealing with another cancer.
I can't verify, but I have read that red wine reduces platelets. Also, I see a naturopath, and one comment he made is that sesame oil may support platelets.
Cant thank you enough for the email!! I have been dealing with my other neuroendocrine cancer which I have learned to say its a desease I am living with.When the hemotologist called lat Friday at 5...well right before the weekend,I fliiped. But she did want me to look on the patient gateway and think this was leukemia,which thankfully its not. They have been giving me platelet shot for a while so I could continue chemo,but they dropped to 40 which put up the reed flag. Just a little more tired than usual as I still try to work. Going to get blood work tomorrow and waiting for the schedule department to call about the biopsy. I am hoping I am on the lower level to only need watching!! I saw my life flash on Friday and havent been able to get past that!
I was diagnosed with MDS-IB2 on April 11, 2024. I signed a consent form to begin chemotherapy with INQOVI. My Dr. says this is preparation for stem cell transplant. I have not started chemotherapy yet. I have an appointment at LEVINE cancer center in Charlotte, NC on May 17, 2024. I am 76 years old. I feel perfectly normal. I have low WBC, RBC, and platelets. Right now I am trying to educate myself about my disease and treatment options.
@kva111
Welcome to the Mayo Clinic Connect. I try to stay in my lane when responding to posts and first I must proclaim ignorance about MDS. I’m glad that you have your appointment on the 17th.
The decisions about treatment are always complex as we humans are complex and different from one another in how we are impacted by
disease. You’ll have some important discussion once you are seen by your hematologist/oncologist. You’ll get information about the disease itself, what you can expect in the way of symptoms and what your treatment options are.
I’d encourage you to write your questions down in advance and if possible, take a trusted friend or family member with you for the discussion. Speaking for myself, I often forget to ask salient questions or sometimes even forget how those questions are answered by the physician. I’m grateful to have my family support with me during those discussions because they can prompt my memory or even ask questions themselves that I haven’t thought of yet.
When I am deciding about treatment options I want to know how the treatment will make me feel, how long do side effects last, and what can be done to mitigate any unpleasant side effects. I am always mindful that at almost 72, quality of life is important to me.
Here is a little information. I generally advise against deep diving into the Dr Google pool of information until you have had an in person visit with your expert provider, especially if it makes you anxious. Anxiety is not your friend. https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/diagnosis-treatment/drc-20366980
Will you let me know how it goes on 5.17?
Hugs.
@kva111
Welcome to the Mayo Clinic Connect. I try to stay in my lane when responding to posts and first I must proclaim ignorance about MDS. I’m glad that you have your appointment on the 17th.
The decisions about treatment are always complex as we humans are complex and different from one another in how we are impacted by
disease. You’ll have some important discussion once you are seen by your hematologist/oncologist. You’ll get information about the disease itself, what you can expect in the way of symptoms and what your treatment options are.
I’d encourage you to write your questions down in advance and if possible, take a trusted friend or family member with you for the discussion. Speaking for myself, I often forget to ask salient questions or sometimes even forget how those questions are answered by the physician. I’m grateful to have my family support with me during those discussions because they can prompt my memory or even ask questions themselves that I haven’t thought of yet.
When I am deciding about treatment options I want to know how the treatment will make me feel, how long do side effects last, and what can be done to mitigate any unpleasant side effects. I am always mindful that at almost 72, quality of life is important to me.
Here is a little information. I generally advise against deep diving into the Dr Google pool of information until you have had an in person visit with your expert provider, especially if it makes you anxious. Anxiety is not your friend. https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/diagnosis-treatment/drc-20366980
Will you let me know how it goes on 5.17?
Hugs.
Patty: I appreciate your advice. I have stared a list of questions I plan to ask the Doctor at Levine. My wife will be at my side during the consultation. She will have many questions as well. My online queries have mainly been about what is this disease, what is this chemotherapy medication, what is stem cell transplant and so forth. I will let you know how the consultation goes. Thank you for your interest.
I will add I am day 14 after transplant. Nausea control is my biggest issue. I am in a research test to prevent GVHD. I did not realize I would have 2 additional chemos. I thought the chemo on my plan was pills. There are pills after the chemo for 65 days.
Wow. I am still hospitalized till the 6th of May.
Eating? No so much. I would say I am glad i did it, not sure I would do another
Today I am 28 days after transplant. I had a visit with the dr team, but only saw my dr down the hall getting ready to go in another room. I got the nurse. I must update that last Friday I was in my 4th day out of the hospital, and my nausea still had me. Not till I went to the Dr and heard him ask if I had a saltiness in my throat that I thought later what that meant. He mentioned at the visit that I am "killing my kidneys" and I have AKI. Not good. Am I drinking water? Because I essentially failed my 24-urine test before I went in the hospital, I know he knows I do not always drink a lot of water. So, as i thought about what he said, I realized the last time I had chemo in late 2021, I drank 1/2 my weight in water daily. A nurse had told me that this would flush out the toxins. So, I drank at least 1.5 liters of water for 4 days, only one zofran in the morning and my kidney function is back up to the minimum range.
I was a bit on the edgy side today. Not fully sure why. I feel ok now.
Todays results from the nurse are my white cells are climbing, as are my platelets. Looks like my marrow is doing what it is supposed to. All other numbers are good too. All the drugs for rejection look to be working. I did not know that they did not release me from the hospital until the graft looked to be working. Every single nurse provides a bit more into that i did not know.
Right now, the toughest thing is to not have my car to just drive myself around. I used to do that with my other cancer. I will end that every day I say outlound to myself that " I am a bone marrow transplant patient".
Patty: I appreciate your advice. I have stared a list of questions I plan to ask the Doctor at Levine. My wife will be at my side during the consultation. She will have many questions as well. My online queries have mainly been about what is this disease, what is this chemotherapy medication, what is stem cell transplant and so forth. I will let you know how the consultation goes. Thank you for your interest.
kva111,
I agree is not deep diving. The doctor i first say sent me for a bone marrow biopsy. His concern was over my blood numbers and the TP53 gene mutation. Before the biopsy, I sort of felt like my blood number not returning after my cancer in late 2021 could be easily explained away. I ended up have MDS. Bring your questions, and if any remain, write those down too. The hematology nurses are full of answers too. I wish you the best in this consult.
Today I am 28 days after transplant. I had a visit with the dr team, but only saw my dr down the hall getting ready to go in another room. I got the nurse. I must update that last Friday I was in my 4th day out of the hospital, and my nausea still had me. Not till I went to the Dr and heard him ask if I had a saltiness in my throat that I thought later what that meant. He mentioned at the visit that I am "killing my kidneys" and I have AKI. Not good. Am I drinking water? Because I essentially failed my 24-urine test before I went in the hospital, I know he knows I do not always drink a lot of water. So, as i thought about what he said, I realized the last time I had chemo in late 2021, I drank 1/2 my weight in water daily. A nurse had told me that this would flush out the toxins. So, I drank at least 1.5 liters of water for 4 days, only one zofran in the morning and my kidney function is back up to the minimum range.
I was a bit on the edgy side today. Not fully sure why. I feel ok now.
Todays results from the nurse are my white cells are climbing, as are my platelets. Looks like my marrow is doing what it is supposed to. All other numbers are good too. All the drugs for rejection look to be working. I did not know that they did not release me from the hospital until the graft looked to be working. Every single nurse provides a bit more into that i did not know.
Right now, the toughest thing is to not have my car to just drive myself around. I used to do that with my other cancer. I will end that every day I say outlound to myself that " I am a bone marrow transplant patient".
Good morning, Kat! Early on in my transplant it became apparent that it helps to have a sense of humor, a sense of adventure and to be incredibly flexible in handling whatever comes at me on a daily basis! You’re finding that too with little things such as learning the hard way about drinking water. 😉 I was encouraged to drink 80+ ounces daily. It was a struggle some days but it really made a difference in how I felt. Try drinking room temperature water. It goes down faster and is utilized better by the body.
It is frustrating not being able to drive for a while! I remember that too and how liberating it was to finally get behind the wheel again. Slowly you’ll return to some normalcy. I’m happy to hear all your blood numbers are looking good. Don’t be surprised if there are fluctuations…that happens. You’re doing great! Thanks for the update!
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Hi @katgob, I’ve been thinking about you. The first couple weeks are the roughest! You’re in the thick of it right now and unfortunately, nausea might be your companion for a bit yet. At day 14 you are in the zone for your new stem cells to start engrafting. So you should start seeing an increase in your blood cell production pretty soon. When that happens, your energy will begin to return slowly and you’ll be feel incrementally better daily! Keeping in mind this is a marathon, not a race! 😉. Recovery will take a few months before you start feeling ‘normal’…
Eating can be a challenge. Nibble on little snacks of whatever appeals to you. Since you’re in the hospital it’s difficult to get what you want. But generally a transplant unit has a fridge stocked with sandwiches, pudding, protein drinks, cheese sticks, yogurt. While protein intake is important, for a short period until I gained some weight, my dietician was more concerned about getting calories into me, no matter the source. Desperate for something to eat, my husband found Lactaid (lactose free) Ice cream that became my sole source of food some days. He’d make me smoothies with the ice cream as a base. Hang in there! This will get better! Air hug!!
I have been dealing with the neuroendocrine for a year and a half...stable
Just found out about the MDS and am praying there is some change of treatment to control that too!
-
Like -
Helpful -
Hug
1 ReactionI was diagnosed with MDS - MLD (Multi-lineage dysplasia) by BMB in 2020, but 2 other hospitals looked at my previous BMB from 2017 and said MDS was already present then. All 3 of my lines are low, with platelets and WBC being the most concerning. I have been on watch and wait since diagnosis, usually being seen every three months. There have been a few times (now being one of them) that my neutrophils dipped low enough that he preferred to only go 2 months between appointments. I am one of the lucky ones - I have no symptoms yet, and I thank God for that. My Dr. said if my neutrophils have dropped again at my next appointment, he'll want to do another BMB to see if anything is going on (increased blasts, new mutations, etc.)
If you don't have any other symptoms and your platelets are not dangerously low, I suspect you will end up in a watch and wait situation. It must be difficult to have to face this when you're already dealing with another cancer.
I can't verify, but I have read that red wine reduces platelets. Also, I see a naturopath, and one comment he made is that sesame oil may support platelets.
Please keep us posted on your biopsy results!
Cant thank you enough for the email!! I have been dealing with my other neuroendocrine cancer which I have learned to say its a desease I am living with.When the hemotologist called lat Friday at 5...well right before the weekend,I fliiped. But she did want me to look on the patient gateway and think this was leukemia,which thankfully its not. They have been giving me platelet shot for a while so I could continue chemo,but they dropped to 40 which put up the reed flag. Just a little more tired than usual as I still try to work. Going to get blood work tomorrow and waiting for the schedule department to call about the biopsy. I am hoping I am on the lower level to only need watching!! I saw my life flash on Friday and havent been able to get past that!
-
Like -
Helpful -
Hug
1 ReactionI was diagnosed with MDS-IB2 on April 11, 2024. I signed a consent form to begin chemotherapy with INQOVI. My Dr. says this is preparation for stem cell transplant. I have not started chemotherapy yet. I have an appointment at LEVINE cancer center in Charlotte, NC on May 17, 2024. I am 76 years old. I feel perfectly normal. I have low WBC, RBC, and platelets. Right now I am trying to educate myself about my disease and treatment options.
-
Like -
Helpful -
Hug
1 Reaction@kva111
Welcome to the Mayo Clinic Connect. I try to stay in my lane when responding to posts and first I must proclaim ignorance about MDS. I’m glad that you have your appointment on the 17th.
The decisions about treatment are always complex as we humans are complex and different from one another in how we are impacted by
disease. You’ll have some important discussion once you are seen by your hematologist/oncologist. You’ll get information about the disease itself, what you can expect in the way of symptoms and what your treatment options are.
I’d encourage you to write your questions down in advance and if possible, take a trusted friend or family member with you for the discussion. Speaking for myself, I often forget to ask salient questions or sometimes even forget how those questions are answered by the physician. I’m grateful to have my family support with me during those discussions because they can prompt my memory or even ask questions themselves that I haven’t thought of yet.
When I am deciding about treatment options I want to know how the treatment will make me feel, how long do side effects last, and what can be done to mitigate any unpleasant side effects. I am always mindful that at almost 72, quality of life is important to me.
Here is a little information. I generally advise against deep diving into the Dr Google pool of information until you have had an in person visit with your expert provider, especially if it makes you anxious. Anxiety is not your friend.
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/diagnosis-treatment/drc-20366980
Will you let me know how it goes on 5.17?
Hugs.
-
Like -
Helpful -
Hug
3 ReactionsPatty: I appreciate your advice. I have stared a list of questions I plan to ask the Doctor at Levine. My wife will be at my side during the consultation. She will have many questions as well. My online queries have mainly been about what is this disease, what is this chemotherapy medication, what is stem cell transplant and so forth. I will let you know how the consultation goes. Thank you for your interest.
-
Like -
Helpful -
Hug
1 ReactionToday I am 28 days after transplant. I had a visit with the dr team, but only saw my dr down the hall getting ready to go in another room. I got the nurse. I must update that last Friday I was in my 4th day out of the hospital, and my nausea still had me. Not till I went to the Dr and heard him ask if I had a saltiness in my throat that I thought later what that meant. He mentioned at the visit that I am "killing my kidneys" and I have AKI. Not good. Am I drinking water? Because I essentially failed my 24-urine test before I went in the hospital, I know he knows I do not always drink a lot of water. So, as i thought about what he said, I realized the last time I had chemo in late 2021, I drank 1/2 my weight in water daily. A nurse had told me that this would flush out the toxins. So, I drank at least 1.5 liters of water for 4 days, only one zofran in the morning and my kidney function is back up to the minimum range.
I was a bit on the edgy side today. Not fully sure why. I feel ok now.
Todays results from the nurse are my white cells are climbing, as are my platelets. Looks like my marrow is doing what it is supposed to. All other numbers are good too. All the drugs for rejection look to be working. I did not know that they did not release me from the hospital until the graft looked to be working. Every single nurse provides a bit more into that i did not know.
Right now, the toughest thing is to not have my car to just drive myself around. I used to do that with my other cancer. I will end that every day I say outlound to myself that " I am a bone marrow transplant patient".
-
Like -
Helpful -
Hug
1 Reactionkva111,
I agree is not deep diving. The doctor i first say sent me for a bone marrow biopsy. His concern was over my blood numbers and the TP53 gene mutation. Before the biopsy, I sort of felt like my blood number not returning after my cancer in late 2021 could be easily explained away. I ended up have MDS. Bring your questions, and if any remain, write those down too. The hematology nurses are full of answers too. I wish you the best in this consult.
-
Like -
Helpful -
Hug
2 ReactionsGood morning, Kat! Early on in my transplant it became apparent that it helps to have a sense of humor, a sense of adventure and to be incredibly flexible in handling whatever comes at me on a daily basis! You’re finding that too with little things such as learning the hard way about drinking water. 😉 I was encouraged to drink 80+ ounces daily. It was a struggle some days but it really made a difference in how I felt. Try drinking room temperature water. It goes down faster and is utilized better by the body.
It is frustrating not being able to drive for a while! I remember that too and how liberating it was to finally get behind the wheel again. Slowly you’ll return to some normalcy. I’m happy to hear all your blood numbers are looking good. Don’t be surprised if there are fluctuations…that happens. You’re doing great! Thanks for the update!
-
Like -
Helpful -
Hug
3 Reactions