NG,
I don't have access to the full text of this article, but it seems to suggest a case similar to yours (multiple lipomas in a multiple myeloma patient), but with the involved drugs being Velcade and dex.
M Gotoh et al, "Multiple lipoma with hyperlipidemia in a multiple myeloma patient treated with bortezomib / dexamethazone," Leukemia Research, April 2010.
Abstract:
Bortezomib (Bercade®) is a proteasome inhibitor, that inhibits the ubiquitin pathway to enter clinical studies [1,2]. This pathway controls the activation of nuclear factor-kappa B (NF-κB; a major transcription factor) by regulating degradation of the NF-κB inhibitor (I-κB). In cancer, dysregulation of this catalytic process may contribute to tumor progression, drug resistance, and altered immune surveillance. Thus, any inhibition of the proteasome system creates an imbalance of various regulatory proteins, triggering cell cycle arrest in the G1/S and G2/M phases of the cell cycle and in the apoptotic pathways within the cell.
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Thalidomide-dex - bullous protusions / lipomas
Multibilly,
Thank you for the info - I am not a member of that site but will pursue it further.
Nancy,
I have had my feet xrayed at least 5 times and absolutely nothing has been done to fix the problem -- unless they plan on destroying the bulges by Xraying them into oblivion. Over the last 10 years I have so many xrays – back ,full skeletal etc. and other types of radiation – I probably would set off a Geiger more readily than a survivor of Hiroshima. The medical people there were unprofessonal trolls who were working on the basis that every one who comes in there has bone problems. Not that I don't have any bone problems, but that IS not the cause of my disfigurement .
Thanks for the feed back. I do consider anything at this point.
Best regards,
NG
Thank you for the info - I am not a member of that site but will pursue it further.
Nancy,
I have had my feet xrayed at least 5 times and absolutely nothing has been done to fix the problem -- unless they plan on destroying the bulges by Xraying them into oblivion. Over the last 10 years I have so many xrays – back ,full skeletal etc. and other types of radiation – I probably would set off a Geiger more readily than a survivor of Hiroshima. The medical people there were unprofessonal trolls who were working on the basis that every one who comes in there has bone problems. Not that I don't have any bone problems, but that IS not the cause of my disfigurement .
Thanks for the feed back. I do consider anything at this point.
Best regards,
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,
What area are you in with Kaiser? I am in Vancouver, Washington!
If Kaiser has a lipoma clinic I would like to find out where?
I am not of course sure about the nomenclature that should be use on these nasty limps on the bottoms of my hands and feet, but the one on my forehead was definitely ID'd as a lipoma. As they all arrived at approximately the same time, my suspicion is that they are all the same (which is why I had it removed and sent to the lab).
My GP has explained nothing to me,
NG
Hi Rneb,
Nipon Ginko is actually in reference to the "Bank of Japan." I know Nipon is actually spelled Nippon but chose to spell it the other way. It started out as a joke while I was in Japan back in the 60's. When I started using the Internet I chose that as a nom de plume just for fun.
I have had the lipoma on my forehead removed January 2012 and there is no sign at this time that it may be planning a General Macarthur special and "RETURN". In fact, at this time it is totally unnoticeable due to slight wrinkling in that area of my forehead .
IF I am unable to get them removed I'm afraid my health will continue to deteriorate as I am gaining weight. I'm at 230 lbs [104 kg], my blood pressure is nasty without medication, and when I take enough to keep my blood pressure down, I have episodes of my blood pressure AND pulse falling to the point that I have actually came close to passing out .
I collapsed in my urologist's office recently - BP dropped to 70 /45, pulse rate of 40. Wwhile I was there, my pulse rate dropped below 30. I was admitted to the hospital and kept over night. No meds -- they gave me epinephrine and I was kept off all BP meds. The hospital doctor released me the next morning after taking me off 2 of the 4 BP meds my doctor had me on.
I saw my primary care doctor 2 days later and he started me back on those same drugs at a lower dose. He is now trying to increase the dosage back toward the levels that caused me the problems, due to the fact I had a couple of BP readings of 145 /90??
I am resisting this, as I would prefer not passing out while driving down the road or falling on my face in my shop into my welder or grinder.
As far as my providers being leery of operating, I think that is because that is what they were trained for and, if they are not comfortable with their skill level, I think it's time they got out of medicine and perhaps took up under water basket weaving , or pursued becoming world
tiddly wink champion.
If I sound like I am becoming somewhat frustrated with this BS, you are correct !
Not familiar with soft tissue plasmacytoma. I'll look it up.
Thanks,
NG
What area are you in with Kaiser? I am in Vancouver, Washington!
If Kaiser has a lipoma clinic I would like to find out where?
I am not of course sure about the nomenclature that should be use on these nasty limps on the bottoms of my hands and feet, but the one on my forehead was definitely ID'd as a lipoma. As they all arrived at approximately the same time, my suspicion is that they are all the same (which is why I had it removed and sent to the lab).
My GP has explained nothing to me,
NG
Hi Rneb,
Nipon Ginko is actually in reference to the "Bank of Japan." I know Nipon is actually spelled Nippon but chose to spell it the other way. It started out as a joke while I was in Japan back in the 60's. When I started using the Internet I chose that as a nom de plume just for fun.
I have had the lipoma on my forehead removed January 2012 and there is no sign at this time that it may be planning a General Macarthur special and "RETURN". In fact, at this time it is totally unnoticeable due to slight wrinkling in that area of my forehead .
IF I am unable to get them removed I'm afraid my health will continue to deteriorate as I am gaining weight. I'm at 230 lbs [104 kg], my blood pressure is nasty without medication, and when I take enough to keep my blood pressure down, I have episodes of my blood pressure AND pulse falling to the point that I have actually came close to passing out .
I collapsed in my urologist's office recently - BP dropped to 70 /45, pulse rate of 40. Wwhile I was there, my pulse rate dropped below 30. I was admitted to the hospital and kept over night. No meds -- they gave me epinephrine and I was kept off all BP meds. The hospital doctor released me the next morning after taking me off 2 of the 4 BP meds my doctor had me on.
I saw my primary care doctor 2 days later and he started me back on those same drugs at a lower dose. He is now trying to increase the dosage back toward the levels that caused me the problems, due to the fact I had a couple of BP readings of 145 /90??
I am resisting this, as I would prefer not passing out while driving down the road or falling on my face in my shop into my welder or grinder.
As far as my providers being leery of operating, I think that is because that is what they were trained for and, if they are not comfortable with their skill level, I think it's time they got out of medicine and perhaps took up under water basket weaving , or pursued becoming world
tiddly wink champion.
If I sound like I am becoming somewhat frustrated with this BS, you are correct !
Not familiar with soft tissue plasmacytoma. I'll look it up.
Thanks,
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
NG,
I am in Riverside County, California.
They do not have a “lipoma clinic”, that is a term I created because I believe the majority of what they do is this kind of thing. Their hospitals have a minor surgery outpatient clinic where they remove lipomas, sarcomas, skin cancers, and other lumps and bumps. A nurse practitioner removed mine. This kind of minor surgery is all he does, all day long, all year long. Everything goes to the lab to check what it is. He said he does over a 1000 a year. He is really quick and efficient with all that experience, in and out in less than 30 minutes, then on to the next. A GP can simply write up an order to have whatever needs to be done and they call you and schedule it. My GP was considering doing it himself but he elected to send me to the minor surgery clinic as it would be much more efficient.
From what you have said, I do not understand why they cannot biopsy the lumps in your feet to determine what they are. If they are lipomas, I do not understand why they do not just take them out and see if that resolves the problem. As other posters mentioned, they sometimes can come back, but most often they do not. And even if they did, I do not believe it would be that quickly, and just remove them again. It is a minor surgery in the majority of case to do.
The thing is, they are causing you problems with pain and walking now, so what is the down side? Remember, I am not a doctor, so this is just my thinking about what I would do if I was in your position.
More importantly, it seems you are in a vacuum of information about what your doctors are thinking about this. They should be able to provide you with an explanation for what they are thinking and doing or why they are not doing something.
In my mind lipomas are a really simple thing that all doctors learn about in medical school and they should be comfortable dealing with them. Skin disorders like this are the specialty of dermatologist though so maybe if you can see one they will see this as something simple and move forward with getting them removed.
When I had mine, I researched lipomas a bit on the Internet. The vast majority are just beneath the skin. Sometime they are not just below the skin and can be involved with underlying tissue structures. I believe a general surgeon can generally deal with excising them in these cases. It usually is not that complicated.
But, again, if the x-rays show no bone protrusions, why not biopsy to find out what it is?
Also I have found with my HMO that not all doctors are the same just because they are working for the same organization. I am pretty patient and so far I have not encountered the kind of difficulty you have. I cannot say I have had a bad doctor yet, there have been average doctors and really good. My GP is really good. I am not one to hop from doctor to doctor every time I get frustrated with something, but you may want to consider trying another GP if you think that indeed he is subpar. You can switch.
I am in Riverside County, California.
They do not have a “lipoma clinic”, that is a term I created because I believe the majority of what they do is this kind of thing. Their hospitals have a minor surgery outpatient clinic where they remove lipomas, sarcomas, skin cancers, and other lumps and bumps. A nurse practitioner removed mine. This kind of minor surgery is all he does, all day long, all year long. Everything goes to the lab to check what it is. He said he does over a 1000 a year. He is really quick and efficient with all that experience, in and out in less than 30 minutes, then on to the next. A GP can simply write up an order to have whatever needs to be done and they call you and schedule it. My GP was considering doing it himself but he elected to send me to the minor surgery clinic as it would be much more efficient.
From what you have said, I do not understand why they cannot biopsy the lumps in your feet to determine what they are. If they are lipomas, I do not understand why they do not just take them out and see if that resolves the problem. As other posters mentioned, they sometimes can come back, but most often they do not. And even if they did, I do not believe it would be that quickly, and just remove them again. It is a minor surgery in the majority of case to do.
The thing is, they are causing you problems with pain and walking now, so what is the down side? Remember, I am not a doctor, so this is just my thinking about what I would do if I was in your position.
More importantly, it seems you are in a vacuum of information about what your doctors are thinking about this. They should be able to provide you with an explanation for what they are thinking and doing or why they are not doing something.
In my mind lipomas are a really simple thing that all doctors learn about in medical school and they should be comfortable dealing with them. Skin disorders like this are the specialty of dermatologist though so maybe if you can see one they will see this as something simple and move forward with getting them removed.
When I had mine, I researched lipomas a bit on the Internet. The vast majority are just beneath the skin. Sometime they are not just below the skin and can be involved with underlying tissue structures. I believe a general surgeon can generally deal with excising them in these cases. It usually is not that complicated.
But, again, if the x-rays show no bone protrusions, why not biopsy to find out what it is?
Also I have found with my HMO that not all doctors are the same just because they are working for the same organization. I am pretty patient and so far I have not encountered the kind of difficulty you have. I cannot say I have had a bad doctor yet, there have been average doctors and really good. My GP is really good. I am not one to hop from doctor to doctor every time I get frustrated with something, but you may want to consider trying another GP if you think that indeed he is subpar. You can switch.
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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
I completely agree with Eric on all the points he has made in this thread. I am nearly certain that my GP and my onc would have referred me early on to a general surgeon to have these removed. There are very gifted and competent general surgeons that do this sort of procedure all the time. I had a general surgeon remove a rectal polyp a few years back and he did just an amazing job and no recovery time was needed.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Thalidomide-dex - bullous protusions / lipomas
Nipon:
Another reason your GP/ consults may be Holstering their scalpels, is your age, fluid retention, uncontrolled BP, and other general health conditions. You are prolly an ASA III or higher. (Anesthesia risk)
With the level of involvement (your description), the likelihood of re-currence (if lipoma based) increases. General anesthesia / tourniquet use may also be required if the "growths" are as extensive as you have suggested. You would also be off your feet for quite awhile, healing. You would likely fluid retain, and BP control /meds might be difficult---post-op. Perhaps nerve damage and adequate wound healing is thus, another complicating issue...or two/three.
Sorry, You don't sound like a decent surgical candidate for various reasons. Not to blame anyone, but a cut first and say "Oh Sh_t", later, isn't really a good approach to your problem.
You impress me as a "tough Old Bird" who has been thru alot. Just like a Ginkgo tree. God bless you. However, I think the providers are thinking "First, do no Harm" (Primum Non Nocere) in being non-committal to surgery.
Perhaps a staged process of several arthroscope procedures ( with a spinal block?) may give you relief, without triggering your anesthetic / BP issues /wound healing ?
Custom Orthotics may also be a solution / partial solution.
Good luck.
Another reason your GP/ consults may be Holstering their scalpels, is your age, fluid retention, uncontrolled BP, and other general health conditions. You are prolly an ASA III or higher. (Anesthesia risk)
With the level of involvement (your description), the likelihood of re-currence (if lipoma based) increases. General anesthesia / tourniquet use may also be required if the "growths" are as extensive as you have suggested. You would also be off your feet for quite awhile, healing. You would likely fluid retain, and BP control /meds might be difficult---post-op. Perhaps nerve damage and adequate wound healing is thus, another complicating issue...or two/three.
Sorry, You don't sound like a decent surgical candidate for various reasons. Not to blame anyone, but a cut first and say "Oh Sh_t", later, isn't really a good approach to your problem.
You impress me as a "tough Old Bird" who has been thru alot. Just like a Ginkgo tree. God bless you. However, I think the providers are thinking "First, do no Harm" (Primum Non Nocere) in being non-committal to surgery.
Perhaps a staged process of several arthroscope procedures ( with a spinal block?) may give you relief, without triggering your anesthetic / BP issues /wound healing ?
Custom Orthotics may also be a solution / partial solution.
Good luck.
-
Rneb
Re: Thalidomide-dex - bullous protusions / lipomas
Rneb:
I have tried custom orthotics at a cost of $500 out of pocket. They hurt my feet worse than the shoes without them.
Your reference to my age for refusing to fix my feet does not seem to fly, as they want to give me a colonoscopy, and they want to use gas because the last time I had one done, the 14 fingered troll who was doing the procedure was so brutal the pain woke me up from the mild sedative they had given me. He claims HE had a hard time?
As far as being off my feet, I am only on them now for very short periods of time. I was thinking of doing my feet one at a time!
My opinion is if these doctors are so unsure of their ability to do this operation, perhaps they should chose another trade.
I was thinking of them using a local. I have had stitches (3) put in my left eye brow with no anesthetic, although I have never had a problem with normal anesthetic. I just don't like the idea of gas, as I know of cases where they killed healthy individuals with faulty application of gas.
Your ginko tree is starting to look interesting - old, tough, drops things, smells a little rangy, hmmm who knows.
I sailed on board the USS Midway in 1965 & spent 10 months in the Tonkin Gulf repairing planes and loading bombs. M squadron loaded out 6,000,000 lbs of bombs in that period of time. Anyone interested in viewing our exploits, google 'VA25 toilet bomb'. The pilot XO Bill Stoddard was killed on the following cruise by SAM missiles, 3 to be exact .
Regards, N.G.
I have tried custom orthotics at a cost of $500 out of pocket. They hurt my feet worse than the shoes without them.
Your reference to my age for refusing to fix my feet does not seem to fly, as they want to give me a colonoscopy, and they want to use gas because the last time I had one done, the 14 fingered troll who was doing the procedure was so brutal the pain woke me up from the mild sedative they had given me. He claims HE had a hard time?
As far as being off my feet, I am only on them now for very short periods of time. I was thinking of doing my feet one at a time!
My opinion is if these doctors are so unsure of their ability to do this operation, perhaps they should chose another trade.
I was thinking of them using a local. I have had stitches (3) put in my left eye brow with no anesthetic, although I have never had a problem with normal anesthetic. I just don't like the idea of gas, as I know of cases where they killed healthy individuals with faulty application of gas.
Your ginko tree is starting to look interesting - old, tough, drops things, smells a little rangy, hmmm who knows.
I sailed on board the USS Midway in 1965 & spent 10 months in the Tonkin Gulf repairing planes and loading bombs. M squadron loaded out 6,000,000 lbs of bombs in that period of time. Anyone interested in viewing our exploits, google 'VA25 toilet bomb'. The pilot XO Bill Stoddard was killed on the following cruise by SAM missiles, 3 to be exact .
Regards, N.G.
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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
NG,
For what it's worth, I've had a couple of ganglion cysts removed in my body over the years. There has always been the usual caution expressed beforehand by the surgeon that they could grow back after removal (they haven't and it has been many years now).
I am in great health (other than smoldering), but I always refuse general anesthesia, unless I absolutely have to have it. I instead always go for a local (I did this on my BMB, even though general sedation was offered to me). My doctors are always surprised when I request this approach, but it always works out great. When I had my ganglion cyst removed from inside my wrist, I simply had "regional anesthesia applied" to my arm (a Bier block).
Your condition just sounds like a miserable state of affairs to deal with. I think I would personally want to go through with having them removed, even if I knew they might grow back in a year or two. Perhaps you could have one or two of the more offending bastards removed in a trial surgery and then go for having the rest removed after you see the results of that first surgery?
For what it's worth, I've had a couple of ganglion cysts removed in my body over the years. There has always been the usual caution expressed beforehand by the surgeon that they could grow back after removal (they haven't and it has been many years now).
I am in great health (other than smoldering), but I always refuse general anesthesia, unless I absolutely have to have it. I instead always go for a local (I did this on my BMB, even though general sedation was offered to me). My doctors are always surprised when I request this approach, but it always works out great. When I had my ganglion cyst removed from inside my wrist, I simply had "regional anesthesia applied" to my arm (a Bier block).
Your condition just sounds like a miserable state of affairs to deal with. I think I would personally want to go through with having them removed, even if I knew they might grow back in a year or two. Perhaps you could have one or two of the more offending bastards removed in a trial surgery and then go for having the rest removed after you see the results of that first surgery?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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