Thanks for replying to my questions Victor, It is good that the tumour was found accidentally. I know a bit about kidney cancer since a close friend had to have one kidney removed also. That was about 4-5 years ago The symptoms of the cancer were through blood in the urine. She still has problems though, but there are treatments available for renal cell cancer that remind me of myeloma treatments, i.e., biologics.
Good luck to you!
Forums
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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: Pomalyst, cyclophosphamide & dexamethasone treatment
As mentioned back in March, I have a tumor in the right kidney and I am booked in to have surgery early in September. Even at this point, there are very few symptoms that would concern me although I have seen some decline in kidney function in my monthly blood tests although nothing, as yet, too serious.
Whereas I have complete confidence in the procedure for removing the diseased kidney, my current concern is for what effect this major surgery will have on the myeloma, which is quite stable at present. When I had my enlarged (but benign) thyroid gland removed about three years ago, I immediately experienced a substantial relapse with the myeloma, which has resulted in my ongoing Pomalyst treatment.
Does anyone know whether it is common to experience relapse following a surgical intervention for a separate problem? Am I right to be concerned that the procedure could cause a relapse? I wonder whether I should suggest having a less dramatic treatment for the kidney tumor, such as embolization?
Any advice or opinions would be appreciated.
Kindest regards to you all,
Victor L
Whereas I have complete confidence in the procedure for removing the diseased kidney, my current concern is for what effect this major surgery will have on the myeloma, which is quite stable at present. When I had my enlarged (but benign) thyroid gland removed about three years ago, I immediately experienced a substantial relapse with the myeloma, which has resulted in my ongoing Pomalyst treatment.
Does anyone know whether it is common to experience relapse following a surgical intervention for a separate problem? Am I right to be concerned that the procedure could cause a relapse? I wonder whether I should suggest having a less dramatic treatment for the kidney tumor, such as embolization?
Any advice or opinions would be appreciated.
Kindest regards to you all,
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hi Victor,
I also had surgery (and radiation), for breast cancer, in 2016. My myeloma was stable at that time. My oncologist took me off of Revlimid (25 mg) and dexamethasone temporarily for that surgery. He felt that it would be difficult for me to be getting treatments for myeloma at that time. Much to my surprise, I have still not returned to taking therapy for myeloma. So in my case, the surgery did not adversely affect the stability of the myeloma.
Have you asked your myeloma specialist if you will be dropping your Pomalyst treatments while getting the kidney surgery? I would think that if you are in reality fighting against two cancers (or diseases) right now, the removal of the kidney might be helpful. I don't know what having an 'embolization' would entail, but your kidney specialist would have opinions on that.
Everyone is different, of course, and it is probably difficult to predict how the surgery might affect the myeloma.
Good luck!
I also had surgery (and radiation), for breast cancer, in 2016. My myeloma was stable at that time. My oncologist took me off of Revlimid (25 mg) and dexamethasone temporarily for that surgery. He felt that it would be difficult for me to be getting treatments for myeloma at that time. Much to my surprise, I have still not returned to taking therapy for myeloma. So in my case, the surgery did not adversely affect the stability of the myeloma.
Have you asked your myeloma specialist if you will be dropping your Pomalyst treatments while getting the kidney surgery? I would think that if you are in reality fighting against two cancers (or diseases) right now, the removal of the kidney might be helpful. I don't know what having an 'embolization' would entail, but your kidney specialist would have opinions on that.
Everyone is different, of course, and it is probably difficult to predict how the surgery might affect the myeloma.
Good luck!
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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: Pomalyst, cyclophosphamide & dexamethasone treatment
Thank you, Nancy, for your response and for the information.
This week I have discussed with my doctor about the embolization option, which entails inserting a product into the vein supplying the blood to the kidney, in this way cutting off the blood supply so that the kidney, and the tumor, die off. At this stage, he is not very enthusiastic about this, and so removal looks to be still on the cards. I will have a kidney function examination next week and then I must wait until the beginning of September.
Kind Regards,
Victor L
This week I have discussed with my doctor about the embolization option, which entails inserting a product into the vein supplying the blood to the kidney, in this way cutting off the blood supply so that the kidney, and the tumor, die off. At this stage, he is not very enthusiastic about this, and so removal looks to be still on the cards. I will have a kidney function examination next week and then I must wait until the beginning of September.
Kind Regards,
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hi Victor,
Thank you for your updates regarding your treatment and the situation with your kidney.
Is it clear at this point whether the cyst or tumor on your kidney is benign, or is surgery being planned because it is not benign?
My initial reaction to your question about whether or not it is okay to have surgery was that I would not worry about the issue. But I thought about it a bit more and decided to do some poking around on the Internet. I found an article, accompanied by an editorial, discussing possible links between surgical scars and the development of extramedullary disease at the sites of such scars. I've included links to the article and editorial below.
Now, the potential link between surgery and extramedullary disease is different than what you asked. To be honest, I doubt there is a link between surgery and the sort of relapse you experienced. I do wonder, however, if it the research related to extramedullary disease raises questions that you might want to discuss with your myeloma specialist. For example, if it is necessary for you to go forward with the surgery, could it be done in a way that minimizes scars (surgical wounds), and might some treatment be planned to minimize the likelihood that any myeloma cells successfully implant themselves in the surgical wound while it is healing (almost a kind of "consolidation therapy")?
In any case, I wish you much luck with your decision making. Please keep us posted on how you are doing, and thank you, again, for all your updates.
References:
Article:
"Myeloma in Scar Tissue - An Underreported Phenomenon or an Emerging Entity in the Novel Agents' Era? A Single Center Series"
https://www.karger.com/Article/Abstract/354830
Editorial:
"Extramedullary Myeloma Spread Triggered by Surgical Procedures: An Emerging Entity?"
https://www.karger.com/Article/FullText/354833
Thank you for your updates regarding your treatment and the situation with your kidney.
Is it clear at this point whether the cyst or tumor on your kidney is benign, or is surgery being planned because it is not benign?
My initial reaction to your question about whether or not it is okay to have surgery was that I would not worry about the issue. But I thought about it a bit more and decided to do some poking around on the Internet. I found an article, accompanied by an editorial, discussing possible links between surgical scars and the development of extramedullary disease at the sites of such scars. I've included links to the article and editorial below.
Now, the potential link between surgery and extramedullary disease is different than what you asked. To be honest, I doubt there is a link between surgery and the sort of relapse you experienced. I do wonder, however, if it the research related to extramedullary disease raises questions that you might want to discuss with your myeloma specialist. For example, if it is necessary for you to go forward with the surgery, could it be done in a way that minimizes scars (surgical wounds), and might some treatment be planned to minimize the likelihood that any myeloma cells successfully implant themselves in the surgical wound while it is healing (almost a kind of "consolidation therapy")?
In any case, I wish you much luck with your decision making. Please keep us posted on how you are doing, and thank you, again, for all your updates.
References:
Article:
"Myeloma in Scar Tissue - An Underreported Phenomenon or an Emerging Entity in the Novel Agents' Era? A Single Center Series"
https://www.karger.com/Article/Abstract/354830
Editorial:
"Extramedullary Myeloma Spread Triggered by Surgical Procedures: An Emerging Entity?"
https://www.karger.com/Article/FullText/354833
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hello my friends,
Thank you for going to the trouble of looking into this. Having read the information, it is perhaps as I feared, that there may be a risk of some further problems with the myeloma when undergoing surgery.
The needle biopsy was done about two months ago and showed a low level of malignancy. The tumor is well encapsulated and shows no signs of diffusing, and the surgeon was quite happy to wait until September.
I am still taking my various medications, the main one being the Pomalyst 4 mg every day for three weeks out of the month. I will have an appointment with the anesthesiologist toward the end of August and a further appointment with the myeloma specialist one week before my surgery. Next week I will have a kidney function test and analysis to see how the kidneys are working.
Thank you again Cheryl G, Nancy, and everyone else for the information.
Victor L
Thank you for going to the trouble of looking into this. Having read the information, it is perhaps as I feared, that there may be a risk of some further problems with the myeloma when undergoing surgery.
The needle biopsy was done about two months ago and showed a low level of malignancy. The tumor is well encapsulated and shows no signs of diffusing, and the surgeon was quite happy to wait until September.
I am still taking my various medications, the main one being the Pomalyst 4 mg every day for three weeks out of the month. I will have an appointment with the anesthesiologist toward the end of August and a further appointment with the myeloma specialist one week before my surgery. Next week I will have a kidney function test and analysis to see how the kidneys are working.
Thank you again Cheryl G, Nancy, and everyone else for the information.
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Today I received my electrophoresis test results. This is a monthly test, and for the first time since starting on the current Pomalyst regimen, the monoclonal peak has gone.
This will be the last test prior to kidney surgery next month. The kidney function test would seem to indicate that the affected kidney is doing very little work now.
Regards,
Victor L
This will be the last test prior to kidney surgery next month. The kidney function test would seem to indicate that the affected kidney is doing very little work now.
Regards,
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Congratulations on your latest M-spike report, Victor. That's wonderful news!
I also appreciate the clarification about what is going on with your kidney. I'm sorry that the tumor is malignant, but I'm very glad that it apparently is not a serious concern.
Given that the kidney tumor is a secondary malignancy, I'm curious if your myeloma doctors have discussed with you whether it might be related to your Pomalyst and cyclophosphamide treatment.
As you probably know, secondary malignancies are a risk associated with long-term treatment with drugs such as Revlimid, thalidomide, and Pomalyst.
Also, at least one well known study indicates that being treated with Revlimid and melphalan at the same time causes the highest risk of secondary malignancy. An explanation "in layman's terms" is that melphalan creates some "genetic instability" in body tissues, which Revlimid then makes worse, increasing the chances of secondary cancer. Cyclophosphamide is in the same class of drugs as melphalan, so I wonder if using it together with Pomalyst increases the chances of secondary cancer.
In any case, congratulations again on the M-spike elimination, and good luck as you prepare for the kidney surgery next month.
I also appreciate the clarification about what is going on with your kidney. I'm sorry that the tumor is malignant, but I'm very glad that it apparently is not a serious concern.
Given that the kidney tumor is a secondary malignancy, I'm curious if your myeloma doctors have discussed with you whether it might be related to your Pomalyst and cyclophosphamide treatment.
As you probably know, secondary malignancies are a risk associated with long-term treatment with drugs such as Revlimid, thalidomide, and Pomalyst.
Also, at least one well known study indicates that being treated with Revlimid and melphalan at the same time causes the highest risk of secondary malignancy. An explanation "in layman's terms" is that melphalan creates some "genetic instability" in body tissues, which Revlimid then makes worse, increasing the chances of secondary cancer. Cyclophosphamide is in the same class of drugs as melphalan, so I wonder if using it together with Pomalyst increases the chances of secondary cancer.
In any case, congratulations again on the M-spike elimination, and good luck as you prepare for the kidney surgery next month.
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Yes, Victor, I echo Cheryl's congratulations on having a non-measurable M spike!
I wanted to add that while I was having surgery, a pathologist looked at frozen microtome sections of the cancerous tissue. One of the things that they checked for were myeloma cancerous cells. They looked at the 'margins' of the tissue they removed to check that they had removed all the cancerous tissue. I also needed radiation therapy afterwards.
So, basically this was not just a simple surgery!
I know that there is always a danger of cancerous cells spreading beyond the kidney, so hopefully there will be some tests for that after the surgery, and you will be monitored on a regular basis. Best of luck and hope all goes well!
I wanted to add that while I was having surgery, a pathologist looked at frozen microtome sections of the cancerous tissue. One of the things that they checked for were myeloma cancerous cells. They looked at the 'margins' of the tissue they removed to check that they had removed all the cancerous tissue. I also needed radiation therapy afterwards.
So, basically this was not just a simple surgery!
I know that there is always a danger of cancerous cells spreading beyond the kidney, so hopefully there will be some tests for that after the surgery, and you will be monitored on a regular basis. Best of luck and hope all goes well!
Last edited by Nancy Shamanna on Thu Aug 02, 2018 6:04 pm, edited 1 time in total.
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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: Pomalyst, cyclophosphamide & dexamethasone treatment
Thank you both, Nancy and Cheryl, for the very useful and interesting comments.
I see my myeloma treatment over the past seven years as a sort of 'Hobson's Choice' scenario, and I believe that this secondary malignancy is almost certainly connected to the treatments which I have received, but what are the other options?
I am sure I will be able to discuss these matters with my specialists over the coming weeks. I feel that perhaps regular CT scans or MRI's may help in detecting any further tumors in time to do something about them. Ultimately I must be grateful that already I have had a better-than-average survival outcome, considering that back in 2012 my level of illness was 'almost' stage 4, and it had gone undiagnosed for several years.
What I would like to emphasize is the importance of having symptoms checked out without delay, no matter how slight they may be. Even now, this kidney malignancy is almost asymptomatic, although, as mentioned, the kidney function tests are now revealing the problem.
Many thanks for your interest and good advice. I will keep you updated!
Victor L
I see my myeloma treatment over the past seven years as a sort of 'Hobson's Choice' scenario, and I believe that this secondary malignancy is almost certainly connected to the treatments which I have received, but what are the other options?
I am sure I will be able to discuss these matters with my specialists over the coming weeks. I feel that perhaps regular CT scans or MRI's may help in detecting any further tumors in time to do something about them. Ultimately I must be grateful that already I have had a better-than-average survival outcome, considering that back in 2012 my level of illness was 'almost' stage 4, and it had gone undiagnosed for several years.
What I would like to emphasize is the importance of having symptoms checked out without delay, no matter how slight they may be. Even now, this kidney malignancy is almost asymptomatic, although, as mentioned, the kidney function tests are now revealing the problem.
Many thanks for your interest and good advice. I will keep you updated!
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
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