I have been itching on my face especially, my neck arms, belly and head. Just found this discussion group 15 minutes ago and I am so glad that others who have my experience are will to talk about it. Been having low platelets since last December.
@donnamae90
Ultimately the choice for transfusions will be your choice. I am trying to avoid transfusions for as long as I can. Transfusions are not without problems. When I started Revlimid it was a 10mg dose and I had itching. Creams helped. The dose also hammered my platelets and immune system. So, the dose was lowered. I have mild side effects now. At the transfusion point, which I was very near before Revlimid, I would spent at least 4 hours in the chair for a transfusion. That's not quality of life to me. Over time the Revlimid side effects lessened.
@donnamae90
Ultimately the choice for transfusions will be your choice. I am trying to avoid transfusions for as long as I can. Transfusions are not without problems. When I started Revlimid it was a 10mg dose and I had itching. Creams helped. The dose also hammered my platelets and immune system. So, the dose was lowered. I have mild side effects now. At the transfusion point, which I was very near before Revlimid, I would spent at least 4 hours in the chair for a transfusion. That's not quality of life to me. Over time the Revlimid side effects lessened.
Interested in this discussion. My skin mostly, arms and legs, also itch at night. I have always used dove soap for sensitive skin, then tried cerve skin wash, then oatmeal body wash. Same results. Now I just wash the important parts at night. Not as bad but still itches. Told my hematologist/ oncologist this and he said never heard of this. Looked at me like I’m nuts. I was using baby oil or Vaseline but it makes a mess on my sheets.
My mom got MDS since 5/2024, normal RBC, very high WBC, over 100, and very low platelets, below 15 . Because of poor tolerance to azacitidne, she's now on supportive treatment only, i.e. on oral hydroxyrea, regular blood taking and platelets transfusion if platelets below 10. She is now in stable condition , but itchiness of back, neck and scalp most irritating her especially at night even 2 anti-histamine drugs used and many different creams tried prescribed by doctor. Numbness of both legs also made her in low mood condition. What can I do now?
My mom got MDS since 5/2024, normal RBC, very high WBC, over 100, and very low platelets, below 15 . Because of poor tolerance to azacitidne, she's now on supportive treatment only, i.e. on oral hydroxyrea, regular blood taking and platelets transfusion if platelets below 10. She is now in stable condition , but itchiness of back, neck and scalp most irritating her especially at night even 2 anti-histamine drugs used and many different creams tried prescribed by doctor. Numbness of both legs also made her in low mood condition. What can I do now?
Hi @littlebluebird I’m so sorry your mom is having the nasty itchiness associated with MDS. As you can see with some of the other replies in this discussion your mom isn’t alone in this and it’s super annoying. I didn’t have MDS, but another leukemia associated with it. The itching was relentless and showering only made it worse.
Like member @hlmcneely said in their reply, I also used Dove soap for sensitive skin and Aveeno oatmeal body wash. It helped only a little but even that was a relief. Another ointment that felt soothing was Burt’s Bees Baby Balm. It was oily so I wore cotton pajamas and had inexpensive sheets on the bed so I didn’t ruin the bedding.
The problem is, the itching comes from within and very few ointments or lotions can prevent the itching. From my understanding no one really knows why people with blood cancers tend to itch so much. There is some evidence that cancer cells may release chemicals that irritate your skin’s nerve endings. So there’s not much that can be done topically to change that.
It’s miserable to feel so itchy so I really empathize with your mom, and you, with trying to keep her comfortable. It also sounds like she is developing some neuropathy in her legs. Is your mom able to walk around to get exercise to keep her blood circulating?
What does her doctor say about the numbness?
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I have been itching on my face especially, my neck arms, belly and head. Just found this discussion group 15 minutes ago and I am so glad that others who have my experience are will to talk about it. Been having low platelets since last December.
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Besides ice, I also use olive oil. I run it on all the excessively dry places all over my body.
itching on arms and legs, usually only at night. A serious lack of energy or maybe fatigue is a better description. Are blood transfusions the answer?
@donnamae90
Ultimately the choice for transfusions will be your choice. I am trying to avoid transfusions for as long as I can. Transfusions are not without problems. When I started Revlimid it was a 10mg dose and I had itching. Creams helped. The dose also hammered my platelets and immune system. So, the dose was lowered. I have mild side effects now. At the transfusion point, which I was very near before Revlimid, I would spent at least 4 hours in the chair for a transfusion. That's not quality of life to me. Over time the Revlimid side effects lessened.
On Sat, Dec 14, 2024 at 7:34 AM Mayo Clinic Connect < nf+9223a906+28451071@n1.hubapplication.com> wrote:
> ## reply above this line ##
>
>
> Mayo Clinic Connect
> @janetlen
> < https://connect.mayoclinic.org/member/00-af25f4f50e5c0ae8373252/?utm_source=connect.mayoclinic.org&utm_medium=email&utm_campaign=mention&utm_content=mention_intro_userlink>
> mentioned you in comment on Sat, Dec 14.
>
> *Message*
> @donnamae90
> Ultimately the choice for transfusions will be your choice. I am trying to
> avoid transfusions for as long as I can. Transfusions are not without
> problems. When I started Revlimid it was a 10mg dose and I had itching.
> Creams helped. The dose also hammered my platelets and immune system. So,
> the dose was lowered. I have mild side effects now. At the transfusion
> point, which I was very near before Revlimid, I would spent at least 4
> hours in the chair for a transfusion. That's not quality of life to me.
> Over time the Revlimid side effects lessened.
> VIEW & REPLY
> < https://connect.mayoclinic.org/notification/28451071/?redirect_to=7d481fd714e8bb159770%3Ahttps%3A%2F%2Fconnect.mayoclinic.org%2Fcomment%2F1190250%2F&utm_source=connect.mayoclinic.org&utm_medium=email&utm_campaign=mention&utm_content=view_button>thank
> you that was very helpful. donnamae90
>
Interested in this discussion. My skin mostly, arms and legs, also itch at night. I have always used dove soap for sensitive skin, then tried cerve skin wash, then oatmeal body wash. Same results. Now I just wash the important parts at night. Not as bad but still itches. Told my hematologist/ oncologist this and he said never heard of this. Looked at me like I’m nuts. I was using baby oil or Vaseline but it makes a mess on my sheets.
My mom got MDS since 5/2024, normal RBC, very high WBC, over 100, and very low platelets, below 15 . Because of poor tolerance to azacitidne, she's now on supportive treatment only, i.e. on oral hydroxyrea, regular blood taking and platelets transfusion if platelets below 10. She is now in stable condition , but itchiness of back, neck and scalp most irritating her especially at night even 2 anti-histamine drugs used and many different creams tried prescribed by doctor. Numbness of both legs also made her in low mood condition. What can I do now?
Hi @littlebluebird I’m so sorry your mom is having the nasty itchiness associated with MDS. As you can see with some of the other replies in this discussion your mom isn’t alone in this and it’s super annoying. I didn’t have MDS, but another leukemia associated with it. The itching was relentless and showering only made it worse.
Like member @hlmcneely said in their reply, I also used Dove soap for sensitive skin and Aveeno oatmeal body wash. It helped only a little but even that was a relief. Another ointment that felt soothing was Burt’s Bees Baby Balm. It was oily so I wore cotton pajamas and had inexpensive sheets on the bed so I didn’t ruin the bedding.
The problem is, the itching comes from within and very few ointments or lotions can prevent the itching. From my understanding no one really knows why people with blood cancers tend to itch so much. There is some evidence that cancer cells may release chemicals that irritate your skin’s nerve endings. So there’s not much that can be done topically to change that.
It’s miserable to feel so itchy so I really empathize with your mom, and you, with trying to keep her comfortable. It also sounds like she is developing some neuropathy in her legs. Is your mom able to walk around to get exercise to keep her blood circulating?
What does her doctor say about the numbness?
I think I finally found one that works. Cetaphil
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