Has anyone experienced feeling generally unwell, shaky, nauseated, after stopping Revlimid treatment, temporarily, to try and deal with myelosuppression causing very low platelet count and neutropenia, with lowering white cell counts?
Did anyone experience some gum bleeding on brushing teeth or had unusual bruising.
Platelet infusion was given before when platelets dropped, but the criteria for infusion seems to have changed. The treatment regimen will be reviewed next week. In meantime growth colony stimulating factor (GCSF, Neupogen) injections have been prescribed to bring up neutrophil count. Only other medication for present is acyclovir.
It is the not-feeling-well experience that is new and worrying and not knowing the cause.
Would welcome others experiences if they have had to halt Revlimid treatment on development of myelosuppression.
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Re: Feeling unwell, nauseated after stopping Revlimid
My husband is experiencing this. He has stopped his Revlimid for 2 weeks and plans on stopping it for 2 more. His RBC and platelets were low, also his potassium. He is shaky and having unusual bruising.
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Feeling unwell, nauseated after stopping Revlimid
They stopped Revlimid due to nerve damage. I am very shaky and stomach is upset, little or no appetite. I must be very careful when I stand up after sitting for a while; I get dizzy and have passed out a couple of times.
Doctor says he will start another chemo treatment after the first of the year. He did not tell me the name of the chemo?
Stay positive and have a Happy Holiday.
Tom74
Doctor says he will start another chemo treatment after the first of the year. He did not tell me the name of the chemo?
Stay positive and have a Happy Holiday.
Tom74
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Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
Re: Feeling unwell, nauseated after stopping Revlimid
Tom74 - how are your blood counts?
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Feeling unwell, nauseated after stopping Revlimid
I see the oncologist January 7, 2015 and will post my blood work. Pain in back and chest is back and worse than ever.
Tom74
Tom74
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Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
Re: Feeling unwell, nauseated after stopping Revlimid
Sorry to hear about the pain.
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Feeling unwell, nauseated after stopping Revlimid
Tom,
10 days is a long time to wait if you are in a lot of pain. I don't mean to tell you what to do, but I think you should call your oncologist. You may have an electrolyte imbalance or need fluids. But, if you have chest pain, it deserves attention. If you cannot get in touch with your oncologist, can you contact your primary? If not, you can always go to the emergency room.
I don't mean to alarm you, but very often we feel like we can't "disturb" the doctor. Don't forget, you are the customer, and the doctor works for you, (and your insurance company). Don't suffer needlessly. I had a similar situation around Labor Day, where I had unexplained chest pain. Turns out it was muscular, but was being exacerbated by multiple myeloma meds. It took several weeks for things to quiet down. If you are not eating or drinking enough, you could have something as simple as an electrolyte imbalance, or just need fluids.
I hope you feel better!
10 days is a long time to wait if you are in a lot of pain. I don't mean to tell you what to do, but I think you should call your oncologist. You may have an electrolyte imbalance or need fluids. But, if you have chest pain, it deserves attention. If you cannot get in touch with your oncologist, can you contact your primary? If not, you can always go to the emergency room.
I don't mean to alarm you, but very often we feel like we can't "disturb" the doctor. Don't forget, you are the customer, and the doctor works for you, (and your insurance company). Don't suffer needlessly. I had a similar situation around Labor Day, where I had unexplained chest pain. Turns out it was muscular, but was being exacerbated by multiple myeloma meds. It took several weeks for things to quiet down. If you are not eating or drinking enough, you could have something as simple as an electrolyte imbalance, or just need fluids.
I hope you feel better!
Re: Feeling unwell, nauseated after stopping Revlimid
Had an experience yesterday that prompted me to search the forum. Just seeing this discussion.
I had decided to stop Revlimid for now, because my husband's melanoma has returned and had to have surgery. My co-pay is too high to be able to take care of me and him too.
Anyhow, did stop the Revlimid about a week ago, and this morning I started out with nausea and vomiting, then got confused enough that my husband took me to the ER. Confusion lasted a couple of hours. Nausea was better by this morning.
They did CT scan of head, among other things, and did not find any cause for the problem. Will see my GP tomorrow and oncologist in about a month.
Just wondering if the nausea, vomiting and confusion could be from stopping the Revlimid. Anyone else have similar problem?
I had decided to stop Revlimid for now, because my husband's melanoma has returned and had to have surgery. My co-pay is too high to be able to take care of me and him too.
Anyhow, did stop the Revlimid about a week ago, and this morning I started out with nausea and vomiting, then got confused enough that my husband took me to the ER. Confusion lasted a couple of hours. Nausea was better by this morning.
They did CT scan of head, among other things, and did not find any cause for the problem. Will see my GP tomorrow and oncologist in about a month.
Just wondering if the nausea, vomiting and confusion could be from stopping the Revlimid. Anyone else have similar problem?
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Bonnie - Name: Bonnie
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April, 2014
- Age at diagnosis: 73
Re: Feeling unwell, nauseated after stopping Revlimid
I was about to start a thread about this. Sorta.
For the last three months I have been more OFF of Revlimid than on; I was told to 'take an extra week off" because my blood count was too low, and the next cycle I had a miserable cold and was told to take an extra week.
Then I had a fire in my house and was unable to retrieve my meds. I found out later that they would have been replaced without cost to me because of the reason they were lost, but in all the confusion I just didn't want to deal with having to (possibly) pay full retail for the half a cycle that I lost. That was another week off.
I don't know whether it's the Revlimid or not, but I've been feeling ... icky ... for weeks, even a couple of months now. Not nauseated, precisely, but definitely not interested in eating. Or doing anything. Everything hurts and I'm exhausted. I feel very much the way I did when I was on full bore chemo ... and when I was coming back from the transplant.
However, my blood work seems to be fine. I'm still in complete remission if you go by that, but that's not what I FEEL.
I can tell you one thing: anyone who says the word 'depression' to me is going to get my shoe placed, with rather more force than is pleasant, in a tender area. I am so TIRED of having everything that goes wrong with me being dismissed as 'it's only depression, take this pill and go away."
So, are we talking here about, possibly, Revlimid withdrawal?
For the last three months I have been more OFF of Revlimid than on; I was told to 'take an extra week off" because my blood count was too low, and the next cycle I had a miserable cold and was told to take an extra week.
Then I had a fire in my house and was unable to retrieve my meds. I found out later that they would have been replaced without cost to me because of the reason they were lost, but in all the confusion I just didn't want to deal with having to (possibly) pay full retail for the half a cycle that I lost. That was another week off.
I don't know whether it's the Revlimid or not, but I've been feeling ... icky ... for weeks, even a couple of months now. Not nauseated, precisely, but definitely not interested in eating. Or doing anything. Everything hurts and I'm exhausted. I feel very much the way I did when I was on full bore chemo ... and when I was coming back from the transplant.
However, my blood work seems to be fine. I'm still in complete remission if you go by that, but that's not what I FEEL.
I can tell you one thing: anyone who says the word 'depression' to me is going to get my shoe placed, with rather more force than is pleasant, in a tender area. I am so TIRED of having everything that goes wrong with me being dismissed as 'it's only depression, take this pill and go away."
So, are we talking here about, possibly, Revlimid withdrawal?
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
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