In 2004 I underwent treatment for multiple myeloma for 10 months using thalidomide and dexamethasone. About a month after I was taken off the medicines, I started noticing that I had bulges on the soles of my feet and the palms of my hands. Also, one bulge on my forehead that was about 1.5 inches (3.8 cm) in diameter and about a quarter inch (0.6 cm) high.
I brought the bulges on my feet, hands and forehead to the attention of my oncologist. He describes bulges on my hands & feet as:
"Lasting bullous in the skin of my hands and feet - as a result of the treatment with thalidomide & dexamethasone".
I tried on several occasions to contact foot doctors in an attempt get some relief from the problems this was causing me for my feet, in particular, as the bullous protrusions make walking quite difficult. Not quite impossible, but almost. I did manage to get a head & neck doctor to excise the lump on my forehead, so it could be determined what was in it and hope the other doctors would get a clue. His report states that the "forehead mass" was a fatty tumor, which he described as a lipoma, which is what I think the other areas (i.e., feet, hands) contain.
I am beginning to think that the foot doctors I am dealing with must have graduated in the bottom 10% of their class as their ability to comprehend what is happening to my feet is becoming ridiculous. They keep repetitively taking X rays of my feet? And, of course, nothing shows up.
(Isn't this one of the definitions of insanity? Keep repeating the same action over & over & expecting a different result.)
I of course am wondering if anyone else has experienced this problem after going thru multiple myeloma treatment and, if so, what was done to correct the problem.
Thanks N.G.
Forums
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Thalidomide-dex - bullous protusions / lipomas
We've had no such experience. But I did have a thought. What if your oncologist referred you to a doctor to have them removed, and explained in the referral what they are?
Also, maybe it is more in the specialty of a dermatologist?
Also, maybe it is more in the specialty of a dermatologist?
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cindyl
Re: Thalidomide-dex - bullous protusions / lipomas
I have not seen this issue personally. And, in this case, I would agree with the previous poster: seek out a dermatologist. It would also be important to appropriately control your neuropathic pain. Gabapentin (Neurontin), Lyrica (pregabalin), ....
Thalidomide quite commonly results in peripheral neuropathy. Was it possible you had these lipomas already and, with the addition of thalidomide and thalidomide-induced peripheral neuropathy, you started noticing them?
I will have to do some investigating to try and determine how often issues like this occur.
Thalidomide quite commonly results in peripheral neuropathy. Was it possible you had these lipomas already and, with the addition of thalidomide and thalidomide-induced peripheral neuropathy, you started noticing them?
I will have to do some investigating to try and determine how often issues like this occur.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Thalidomide-dex - bullous protusions / lipomas
I have no idea if the lipomas you have are caused by your myeloma treatment, but what has me scratching my head is why you are finding it so hard to get those lipomas on your hands and feet removed -- especially when they are causing some problems with comfort and walking.
I have had two lipomas removed that were causing less problems than yours, and I had no trouble getting my lipomas removed. I brought them up to my GP doctor, he agreed, my HMO is my insurance provider, so there was no waiting for any approvals. The procedures got scheduled and were done.
Lipoma removal is a very basic minor surgery where many med students in training get their first experience with the knife. My friend who is a gynecologist told me when she was a med student they had all the students go through what she described as the “lumps and bumps clinic” to remove lipomas and other minor solid tumors. This is the starting point before graduating on to more complicated things. She said she had one patient were they removed 20 lipomas on a single visit.
The forehead may be a little tricky location to deal with, requiring some more experience, but there should be plenty of nurse practitioners and others who have done hundreds or thousands of these. It does not require a full medical degree. And they keep messing around with X-rays and finding nothing?
I am not a doctor, but I do not feel like I am going out on a limb to suggest that you find another foot doctor or, better yet, get to a dermatologist. I did bring the lumps I had up to my oncologist and he looked at them and assessed them to be lipomas. And I felt 95% certain that was the case but, in the back of my mind, there was a little concern they may have been a myeloma solid tumor. When you have myeloma and there is this lump sitting there and you can touch and feel it every day and every hour, it is hard not to have some doubt and your imagine to get away from you. I knew if they are lipomas this was not a problem for my oncologist but for my GP. My oncologist already has his plate pretty full dealing with a lot more serious problems and does not have the time to deal with his patients lipomas.
So on my next visit to my GP I brought them up and told him about my 5% doubt / concerns and he wrote the orders to have them removed, I did not need to see a dermatologist. I think my GP agreed to have them removed if for no other reason to give me some peace of mind. I have lot of other things to worry about.
I have had two lipomas removed that were causing less problems than yours, and I had no trouble getting my lipomas removed. I brought them up to my GP doctor, he agreed, my HMO is my insurance provider, so there was no waiting for any approvals. The procedures got scheduled and were done.
Lipoma removal is a very basic minor surgery where many med students in training get their first experience with the knife. My friend who is a gynecologist told me when she was a med student they had all the students go through what she described as the “lumps and bumps clinic” to remove lipomas and other minor solid tumors. This is the starting point before graduating on to more complicated things. She said she had one patient were they removed 20 lipomas on a single visit.
The forehead may be a little tricky location to deal with, requiring some more experience, but there should be plenty of nurse practitioners and others who have done hundreds or thousands of these. It does not require a full medical degree. And they keep messing around with X-rays and finding nothing?
I am not a doctor, but I do not feel like I am going out on a limb to suggest that you find another foot doctor or, better yet, get to a dermatologist. I did bring the lumps I had up to my oncologist and he looked at them and assessed them to be lipomas. And I felt 95% certain that was the case but, in the back of my mind, there was a little concern they may have been a myeloma solid tumor. When you have myeloma and there is this lump sitting there and you can touch and feel it every day and every hour, it is hard not to have some doubt and your imagine to get away from you. I knew if they are lipomas this was not a problem for my oncologist but for my GP. My oncologist already has his plate pretty full dealing with a lot more serious problems and does not have the time to deal with his patients lipomas.
So on my next visit to my GP I brought them up and told him about my 5% doubt / concerns and he wrote the orders to have them removed, I did not need to see a dermatologist. I think my GP agreed to have them removed if for no other reason to give me some peace of mind. I have lot of other things to worry about.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Thalidomide-dex - bullous protusions / lipomas
Thank you Dr. Shain and the others who responded to my post.
The answer to the question about whether I had the lipomas prior is "No". These things have become quite large, and my peripheral neuropathy was quite mild and has disappeared almost entirely . I only experience pain when I stand on my feet, and it is the pain of pressure on the areas that have the bulges. The bulges on the ball of my foot are so large that they extend up behind my toes and inhibit the movement of my toes. Also, when walking, it's almost like I am rolling over a chock behind my toes, giving me a very awkward gate.
I have had problems getting my GP to take any initiative in this matter. I presented him with both the letters from my initial oncologist and the letter from the head and neck surgeon who removed the lipoma from my forehead. In other things he has been a quite good GP. In fact, he was the individual who insisted they check me for multiple myeloma when the rest were stumbling around in the dark.
I have talked to one other person who has told me that her mother has multiple myeloma and has experienced problems with her feet similar to mine. I have not talked to the mother directly (I should do that), but am forwarding the Beacon to her at present so I still have contact.
Your suggestion to see a dermatologist sounds like a good plan to me. I would like to get my feet in better shape so I can exercise properly, as I know this inactivity is not good for me .
Best regards ... I'll keep in touch on this. Thanks again.
NG
The answer to the question about whether I had the lipomas prior is "No". These things have become quite large, and my peripheral neuropathy was quite mild and has disappeared almost entirely . I only experience pain when I stand on my feet, and it is the pain of pressure on the areas that have the bulges. The bulges on the ball of my foot are so large that they extend up behind my toes and inhibit the movement of my toes. Also, when walking, it's almost like I am rolling over a chock behind my toes, giving me a very awkward gate.
I have had problems getting my GP to take any initiative in this matter. I presented him with both the letters from my initial oncologist and the letter from the head and neck surgeon who removed the lipoma from my forehead. In other things he has been a quite good GP. In fact, he was the individual who insisted they check me for multiple myeloma when the rest were stumbling around in the dark.
I have talked to one other person who has told me that her mother has multiple myeloma and has experienced problems with her feet similar to mine. I have not talked to the mother directly (I should do that), but am forwarding the Beacon to her at present so I still have contact.
Your suggestion to see a dermatologist sounds like a good plan to me. I would like to get my feet in better shape so I can exercise properly, as I know this inactivity is not good for me .
Best regards ... I'll keep in touch on this. Thanks again.
NG
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Thalidomide-dex - bullous protusions / lipomas
Eric,
I'm with Kaiser in Vancouver Washington.
You're right, of course, about questioning the cause of the development of the lipomas, but the coincidence of the timing of the treatment and the rise of these things is hard to ignore .
The head and neck surgeon who removed the lipoma on my forehead did the removal in about 20 minutes and he followed the natural creases of my forehead with the incision, so it hardly shows at all.
My GP has been of little help in this matter. You think you are scratching your head -- I've almost worn mine out!
Who is your provider, if you don't mind my asking.
NG
I'm with Kaiser in Vancouver Washington.
You're right, of course, about questioning the cause of the development of the lipomas, but the coincidence of the timing of the treatment and the rise of these things is hard to ignore .
The head and neck surgeon who removed the lipoma on my forehead did the removal in about 20 minutes and he followed the natural creases of my forehead with the incision, so it hardly shows at all.
My GP has been of little help in this matter. You think you are scratching your head -- I've almost worn mine out!
Who is your provider, if you don't mind my asking.
NG
Eric Hofacket wrote:I have no idea if the lipomas you have are caused by your myeloma treatment, but what has me scratching my head is why you are finding it so hard to get those lipomas on your hands and feet removed -- especially when they are causing some problems with comfort and walking ...
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Thalidomide-dex - bullous protusions / lipomas
Cindy,
My GP keeps referring me to foot doctors and they keep looking for bone type problems - they don't listen to me. One of them wanted to X-ray my ankles?? I refused and the nurse tried to bully me into leaving. I told her to get lost and insisted on seeing the doctor without the X-rays. This doctor's theory was that I have a problem known as Ledderhose's disease (plantar fibromatosis).
I looked it up when I got home. She's full of it. Ledderhose's disease is a more deep rooted problem than what I have, which looks to me like it is directly under the skin. They are like very large burn-type blisters, but the internal composition is more viscus and the skin covering is slightly thicker.
NG
My GP keeps referring me to foot doctors and they keep looking for bone type problems - they don't listen to me. One of them wanted to X-ray my ankles?? I refused and the nurse tried to bully me into leaving. I told her to get lost and insisted on seeing the doctor without the X-rays. This doctor's theory was that I have a problem known as Ledderhose's disease (plantar fibromatosis).
I looked it up when I got home. She's full of it. Ledderhose's disease is a more deep rooted problem than what I have, which looks to me like it is directly under the skin. They are like very large burn-type blisters, but the internal composition is more viscus and the skin covering is slightly thicker.
NG
cindyl wrote:What if your oncologist referred you to a doctor to have them removed, and explained in the referral what they are? Also, maybe it is more in the specialty of a dermatologist?
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Thalidomide-dex - bullous protusions / lipomas
Dear Old Tree:
1) Lipomas (if that is what you have) often regrow, after excision. Sometimes they are even more "Involved" than before.
2) A Bakers type cyst ( Ganglion cysts ). Sometimes they have the same proclivity to re-grow--and some feel they are a direct precursor to an osteo-arthritic lesion. ( Have you ruled out a soft-tissue Plasmacytoma ?)
Another remote possibility is Lupus. Odd presentation, though.
I suspect your providers are prolly leery of opening a pandora's box and are thus holstering their scalpels. However, you can choose from Podiatry, Orthopedics, Plastic Surgeons, etc --if you really want "the growth" removed.
3) Ginko is a popular oriental tree that grows very slowly, is hardy, shade filled, and lives for hundreds of years, per reputation. It is also known as "The stubborn tree" for it's durability.
Good Luck, old one.
1) Lipomas (if that is what you have) often regrow, after excision. Sometimes they are even more "Involved" than before.
2) A Bakers type cyst ( Ganglion cysts ). Sometimes they have the same proclivity to re-grow--and some feel they are a direct precursor to an osteo-arthritic lesion. ( Have you ruled out a soft-tissue Plasmacytoma ?)
Another remote possibility is Lupus. Odd presentation, though.
I suspect your providers are prolly leery of opening a pandora's box and are thus holstering their scalpels. However, you can choose from Podiatry, Orthopedics, Plastic Surgeons, etc --if you really want "the growth" removed.
3) Ginko is a popular oriental tree that grows very slowly, is hardy, shade filled, and lives for hundreds of years, per reputation. It is also known as "The stubborn tree" for it's durability.
Good Luck, old one.
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Rneb
Re: Thalidomide-dex - bullous protusions / lipomas
Hi Nipon Gingko,
Sorry to hear that the growths on your feet are impeding your ability to exercise!
If you don't mind me asking, why wouldn't you get X-rays of your ankles? It's totally painless, and much less in the way of X-rays than a skeletal survey, for example.
Probably the medical people could not proceed on any treatments without having the scan done.
Sorry to hear that the growths on your feet are impeding your ability to exercise!
If you don't mind me asking, why wouldn't you get X-rays of your ankles? It's totally painless, and much less in the way of X-rays than a skeletal survey, for example.
Probably the medical people could not proceed on any treatments without having the scan done.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Thalidomide-dex - bullous protusions / lipomas
NG,
I am with Kaiser too.
It is my understanding that the vast majority of lipomas are removed purely for cosmetic reasons. It is not hard to do. As you said, your ENT had the one on your forehead out in 20 minutes. In your case, the bulbous protrusions or lipomas, if that is what they are, are causing you a fair amount difficulty with walking. I think you would be moved to the front of the line at the lipoma removal clinic.
But a number of other posters on this thread pointed out maybe they are not lipomas and something more complicated. Either way, if they are lipomas, I would think your GP would be able to give a sound explanation for why he is reluctant to have them removed if they are causing you difficulty walking when so many other people have them removed for cosmetic reasons alone.
If your GP feels that maybe they are not lipomas and something more complex, then he should be able to explain what he is thinking to you. Maybe even though they are lipomas, they are in a location that could cause difficulty if removed? Is it so difficult to biopsy them to find out just what they are?
Maybe a dermatologist would feel more comfortable with making a decision on this.
I am with Kaiser too.
It is my understanding that the vast majority of lipomas are removed purely for cosmetic reasons. It is not hard to do. As you said, your ENT had the one on your forehead out in 20 minutes. In your case, the bulbous protrusions or lipomas, if that is what they are, are causing you a fair amount difficulty with walking. I think you would be moved to the front of the line at the lipoma removal clinic.
But a number of other posters on this thread pointed out maybe they are not lipomas and something more complicated. Either way, if they are lipomas, I would think your GP would be able to give a sound explanation for why he is reluctant to have them removed if they are causing you difficulty walking when so many other people have them removed for cosmetic reasons alone.
If your GP feels that maybe they are not lipomas and something more complex, then he should be able to explain what he is thinking to you. Maybe even though they are lipomas, they are in a location that could cause difficulty if removed? Is it so difficult to biopsy them to find out just what they are?
Maybe a dermatologist would feel more comfortable with making a decision on this.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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