My journey has been fairly similar to yours.
Diagnosed April 2012, treated with Velcade and dex for six months, followed by two years of Revlimid and then a year-long drug-free holiday. No stem cell transplant.
My M-spike had been creeping up (from 0.12 g/dl to 0.9 g/dl). No symptoms (CRAB), nor any abnormal blood readings, no activity on PET/CT scan. Like you, I felt perfectly healthy and am not inclined to do a transplant. I did agree to start back on the Revlimid and am waiting to see the results.
Good luck to you, Victor.
Forums
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hello Victor L,
Thanks for explaining the role the economics has played in your treatment. Also the protocol study / research you are participating in has its own restrictions on the participants. I guess you were not given much choice and placed in this protocol study. It is quite possible that the universities get these drugs for free to conduct such studies to test the effectiveness of these drugs. Of course, they often get grants for various cancer research-related studies, too.
Your study group is made up of the "relapsed" myeloma patients and are given the specific number of cycles of the current regimen (Pomalyst, dex, and Cytoxan) followed by a transplant. I think the dosing of these drugs is rather 'standardized' in such studies and, as you wrote, a patient doesn't have much choice. I had a hard time tolerating even the smaller,weekly 20 mg dex on the day of the Velcade shot. I wonder if these studies tailor these doses to a patient's weight as my oncologist did right from the very first week.
Denying Revlimid:
Many health care providers should offer, or at least let the patients try, thalidomide in lieu of Revlimid if the Revlimid cost is the concern. As I recall, government health care programs in many countries had not adopted Revlimid for the myeloma treatment as of last year and thalidomide was prescribed in its place in Asia and even in some European countries. I think that thalidomide should be an option if a patient just cannot afford the expensive Revlimid for a long term maintenance. There has been some discussion on that topic here on the Beacon. However, thalidomide, too, may not be an option for you for maintenance.
After reading coachhoke's post, I am hoping that I, too, can reach that level of response where I would not need any maintenance at all, like the two of you, at least for a while. I really won't mind an alternate day 10 mg Revlimid as an insurance against any monoclonal activity.
It is interesting to know how things are done in Europe (France, in your case, I think). I am sure even here in the U.S., treatment options vary from health maintenance organization (HMO) to HMO, and different Insurance companies may have different coverage, too. Medicare supplementary coverage can vary from state to state.
In my case, for example, once my primary care physician referred me to the oncologist, I have been interacting with the oncologist for everything and he has been very open about my options regarding transplant, in particular. Like coachhoke and you, I have opted to forego transplant, but the Revlimid maintenance will remain in place as long as needed, as I understand it. And I don't think the age restriction on transplant eligibility is applied any more. There are a few accounts of the recent transplant journeys of 70+ year old patients on the Beacon.
I hope you have a great response to the new regimen and that you do not have any major side effects. Please let us know of your progress and any other experience you have on this journey.
Thanks for explaining the role the economics has played in your treatment. Also the protocol study / research you are participating in has its own restrictions on the participants. I guess you were not given much choice and placed in this protocol study. It is quite possible that the universities get these drugs for free to conduct such studies to test the effectiveness of these drugs. Of course, they often get grants for various cancer research-related studies, too.
Your study group is made up of the "relapsed" myeloma patients and are given the specific number of cycles of the current regimen (Pomalyst, dex, and Cytoxan) followed by a transplant. I think the dosing of these drugs is rather 'standardized' in such studies and, as you wrote, a patient doesn't have much choice. I had a hard time tolerating even the smaller,weekly 20 mg dex on the day of the Velcade shot. I wonder if these studies tailor these doses to a patient's weight as my oncologist did right from the very first week.
Denying Revlimid:
Many health care providers should offer, or at least let the patients try, thalidomide in lieu of Revlimid if the Revlimid cost is the concern. As I recall, government health care programs in many countries had not adopted Revlimid for the myeloma treatment as of last year and thalidomide was prescribed in its place in Asia and even in some European countries. I think that thalidomide should be an option if a patient just cannot afford the expensive Revlimid for a long term maintenance. There has been some discussion on that topic here on the Beacon. However, thalidomide, too, may not be an option for you for maintenance.
After reading coachhoke's post, I am hoping that I, too, can reach that level of response where I would not need any maintenance at all, like the two of you, at least for a while. I really won't mind an alternate day 10 mg Revlimid as an insurance against any monoclonal activity.
It is interesting to know how things are done in Europe (France, in your case, I think). I am sure even here in the U.S., treatment options vary from health maintenance organization (HMO) to HMO, and different Insurance companies may have different coverage, too. Medicare supplementary coverage can vary from state to state.
In my case, for example, once my primary care physician referred me to the oncologist, I have been interacting with the oncologist for everything and he has been very open about my options regarding transplant, in particular. Like coachhoke and you, I have opted to forego transplant, but the Revlimid maintenance will remain in place as long as needed, as I understand it. And I don't think the age restriction on transplant eligibility is applied any more. There are a few accounts of the recent transplant journeys of 70+ year old patients on the Beacon.
I hope you have a great response to the new regimen and that you do not have any major side effects. Please let us know of your progress and any other experience you have on this journey.
-
K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hello my friends,
I can now give you an update on my blow-by-blow report on the big fight!
It is now the start of the second week of the treatment consisting of pomalidomide (Pomalyst, Imnovid) 4 mg daily, cyclophosphamide 300 mg once per week, and dexamethasone 40 mg once per week.
I have just received the results of the first small blood test for week one. Although not too much can be assumed at this early stage, it is good to see the red blood cell count and hemoglobin showing a good increase after some months of constant falls. The first is at 5,280,000, a 200,000 increase in the 3 weeks since the last test. Hemoglobin is now 15.2, up from 14.7. All other hematology numbers are good, but the big blood test – including the electrophoresis – will be in another two weeks time prior to my next hematologist appointment.
My side effects for the treatment are minimal, the main one being an unpredictable fatigue which can last for many hours, Sleeping is not easy at these times and I awake feeling worse and so I must sit and try to occupy my mind. Walking the dog is restricted to a walk around the garden instead of our normal 3 to 5 km per day! This fatigue passes quite suddenly and I return to normal.
No hair loss yet, but today I bought a suitable baseball cap just in case.
Big appetite, I have gained 2 kg (4.4 lbs) since the beginning of the month, I must watch that.
As I mentioned last time, all the little aches and pains have gone. They have arranged a cardiology appointment for next month, including 24-hour mobile surveillance.
Coachhoke and K_Shash - Thank you for your comments with which I agree. Thinking back to 2012 and the first mention of the auto transplant, the hematologist said that my name was to be entered into a 'lottery' to find who would have transplants and who would have novel therapies. A month later he gave me the 'very exiting news' that I had been selected for a transplant and we must be very happy. Sickly grin from me, felt like I had won a ticket for the Titanic. As you know I eventually declined and I think this is the current problem. Most people prefer the novel therapy route and to keep the transplant option as a last ditch salvage attempt, I believe many specialists are happy to accept this plan, but it does not help the research boys (and girls). That is why there is a pressure to go this year. I too want to see my progress first before deciding.
In closing I would repeat that, for me, this current treatment regimen is much easier than my first treatment of Velcade, Revlimid and dex. Although the first treatment worked well, the side effects were much stronger, with horrific peripheral neuropathy. None of that at the moment!
Kind Regards to you all and thanks again.
I can now give you an update on my blow-by-blow report on the big fight!
It is now the start of the second week of the treatment consisting of pomalidomide (Pomalyst, Imnovid) 4 mg daily, cyclophosphamide 300 mg once per week, and dexamethasone 40 mg once per week.
I have just received the results of the first small blood test for week one. Although not too much can be assumed at this early stage, it is good to see the red blood cell count and hemoglobin showing a good increase after some months of constant falls. The first is at 5,280,000, a 200,000 increase in the 3 weeks since the last test. Hemoglobin is now 15.2, up from 14.7. All other hematology numbers are good, but the big blood test – including the electrophoresis – will be in another two weeks time prior to my next hematologist appointment.
My side effects for the treatment are minimal, the main one being an unpredictable fatigue which can last for many hours, Sleeping is not easy at these times and I awake feeling worse and so I must sit and try to occupy my mind. Walking the dog is restricted to a walk around the garden instead of our normal 3 to 5 km per day! This fatigue passes quite suddenly and I return to normal.
No hair loss yet, but today I bought a suitable baseball cap just in case.
Big appetite, I have gained 2 kg (4.4 lbs) since the beginning of the month, I must watch that.
As I mentioned last time, all the little aches and pains have gone. They have arranged a cardiology appointment for next month, including 24-hour mobile surveillance.
Coachhoke and K_Shash - Thank you for your comments with which I agree. Thinking back to 2012 and the first mention of the auto transplant, the hematologist said that my name was to be entered into a 'lottery' to find who would have transplants and who would have novel therapies. A month later he gave me the 'very exiting news' that I had been selected for a transplant and we must be very happy. Sickly grin from me, felt like I had won a ticket for the Titanic. As you know I eventually declined and I think this is the current problem. Most people prefer the novel therapy route and to keep the transplant option as a last ditch salvage attempt, I believe many specialists are happy to accept this plan, but it does not help the research boys (and girls). That is why there is a pressure to go this year. I too want to see my progress first before deciding.
In closing I would repeat that, for me, this current treatment regimen is much easier than my first treatment of Velcade, Revlimid and dex. Although the first treatment worked well, the side effects were much stronger, with horrific peripheral neuropathy. None of that at the moment!
Kind Regards to you all and thanks again.
-
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
Brief Update - July 12, 2016
Pomalidomide, Cyclophosphamide, and Dexamethasone Regimen.
Second weekly blood test result today, everything has remained normal with a well-within limits increase in the leukocytes ( 7720, up from 5000 last week), hemoglobin (15.4) and red cell counts (5,300,000) also show a slight increase.
Side effects - I feel that the fatigue issue has become more pronounced during the second week, I could almost describe it like a partial paralysis in the leg muscles, making walking an effort for two or three day per week but this is quite acceptable. Still no hair loss and no peripheral neuropathy as experienced in 2012 with Velcade, Revlimid, and dexamethasone. Voracious appetite!
I will have the big blood test next week.
Pomalidomide, Cyclophosphamide, and Dexamethasone Regimen.
Second weekly blood test result today, everything has remained normal with a well-within limits increase in the leukocytes ( 7720, up from 5000 last week), hemoglobin (15.4) and red cell counts (5,300,000) also show a slight increase.
Side effects - I feel that the fatigue issue has become more pronounced during the second week, I could almost describe it like a partial paralysis in the leg muscles, making walking an effort for two or three day per week but this is quite acceptable. Still no hair loss and no peripheral neuropathy as experienced in 2012 with Velcade, Revlimid, and dexamethasone. Voracious appetite!
I will have the big blood test next week.
-
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
Hello my friends,
I have now completed the first three weeks of relapse treatment involving Pomalyst (pomalidomide, Imnovid), cyclophosphamide, and dexamethasone. I now have a one week 'rest' ready to start the next three week session at the end of the month.
Blood tests are always a worry, the waiting, opening the envelope with trembling hands. After many months of worrying results it is my little monthly nightmare. Today was perhaps the most worrying but I should have had more faith ! I worried that the paraprotein may continue to rise even with the treatment or that it would fall only a little.
The electrophoresis results arrived this morning showing the results for the first three weeks of treatment.
The all important beta 2 kappa IgG has fallen nearly 50% from 3.2 grams per decilitre to 1.7 grams. A big relief indeed. The test has also shown a normal liver function and a 35% improvement for the kidney function, which was previously at 65, getting a bit close to the renal insufficiency level, now it has jumped to 85, My personal opinion on this is that the daily Lovenox injections for thinning the blood also helps the kidneys to function better, I last had this injection in 2014 following a broken hip caused by an accident (no myeloma involvement) and I observed a similar kidney improvement which stopped at the end of the Lovenox course.
I have had no hair loss, pain level is still zero, appetite too strong but hey! We have to have some little pleasures in life!
I will have my next appointment on 25 July and we have to argue the case for/against the auto transplant. I personally prefer the disease management option which would enable easier access to different treatments should the need arise. This can be a difficult option to request once signed into the new protocol, as they like to stay with the allotted treatment so as to keep the survival figures accurate.
Best wishes to you all,
Victor L
I have now completed the first three weeks of relapse treatment involving Pomalyst (pomalidomide, Imnovid), cyclophosphamide, and dexamethasone. I now have a one week 'rest' ready to start the next three week session at the end of the month.
Blood tests are always a worry, the waiting, opening the envelope with trembling hands. After many months of worrying results it is my little monthly nightmare. Today was perhaps the most worrying but I should have had more faith ! I worried that the paraprotein may continue to rise even with the treatment or that it would fall only a little.
The electrophoresis results arrived this morning showing the results for the first three weeks of treatment.
The all important beta 2 kappa IgG has fallen nearly 50% from 3.2 grams per decilitre to 1.7 grams. A big relief indeed. The test has also shown a normal liver function and a 35% improvement for the kidney function, which was previously at 65, getting a bit close to the renal insufficiency level, now it has jumped to 85, My personal opinion on this is that the daily Lovenox injections for thinning the blood also helps the kidneys to function better, I last had this injection in 2014 following a broken hip caused by an accident (no myeloma involvement) and I observed a similar kidney improvement which stopped at the end of the Lovenox course.
I have had no hair loss, pain level is still zero, appetite too strong but hey! We have to have some little pleasures in life!
I will have my next appointment on 25 July and we have to argue the case for/against the auto transplant. I personally prefer the disease management option which would enable easier access to different treatments should the need arise. This can be a difficult option to request once signed into the new protocol, as they like to stay with the allotted treatment so as to keep the survival figures accurate.
Best wishes to you all,
Victor L
-
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
Thank you, Victor, for your detailed updates regarding your first relapse treatment.
My husband has recently relapsed after 2 years of Revlimid (10 mg) daily maintenance, 3 weeks on, 1 week off. His M-protein has risen slowly over 4 months to 1.7 g/dL, and he is anemic, and fatigued. At diagnosis in January 2014 he was 3., with pain and rib and spinal lesions. He opted not to have a stem cell transplant. We see his specialist on August 3 to discuss treatment options.
Please continue your updates, I want to read of your progress. It is very helpful to me as we plan my husband's next course of treatment.
My husband has recently relapsed after 2 years of Revlimid (10 mg) daily maintenance, 3 weeks on, 1 week off. His M-protein has risen slowly over 4 months to 1.7 g/dL, and he is anemic, and fatigued. At diagnosis in January 2014 he was 3., with pain and rib and spinal lesions. He opted not to have a stem cell transplant. We see his specialist on August 3 to discuss treatment options.
Please continue your updates, I want to read of your progress. It is very helpful to me as we plan my husband's next course of treatment.
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hello AnnM,
Thank you for your response, I am pleased if I can at least offer a clear picture picture of my personal experiences during this relapse treatment.
Of course no two people are the same and for me also it is a dilemma, to have an auto stem cell transplant or not. Many medical procedures are clear cut and require no more than a signature on the authorisation document – an appendectomy for example, is an easy decision.
With myeloma it is not so easy, From my hematologist I hear only 'standard of care' and 'reference treatment', but he concedes that there is no guarantee as to the result, he explains that the transplant can give the chance of a better response in terms of the progression-free survival period, but that it may not lead to a significant improvement in overall survival and it comes at a price of course – it is invasive and can require months before life returns to normal.
Transplants have saved and prolonged many lives over the years and will continue to do so, but whereas twenty years ago there were few alternatives available, today we have some very exciting new drugs and therapies which can rival the transplants in terms of results, but without so many side effects, often enabling the patient to continue a normal lifestyle during treatment. I believe that over the coming years this trend will continue with the transplant becoming increasingly specialised and used for a more select group of patients, whilst an increasing number will require only the drug based therapies.
We should remember that the primary purpose of both of these myeloma treatment options is to slow down, to stop, and to reduce the proliferation of myeloma cells in the body. From that the benefits of symptom improvements such as bone pain, anemia and kidney problems will hopefully follow although some patients may require care for these and other secondary issues.
AnnM, your husband will probably require some months of induction therapy similar to my own. Whether he opts for the transplant or not, my personal decision was that if I saw a good response during these months, it would persuade me to avoid a transplant at this stage because I may feel that my immune system needs only some support to fight the illness. If, conversely, the response was poor, I would want to ask for at least one other drug treatment option before accepting that a transplant might be the only remaining option.
The decision is for the patient, having examined the options and having listened to the professional advice and having looked at the evidence of other myeloma sufferers. I will continue to post updates for my own treatment and I can only repeat that after the first month I am pleased with my progress which I pray will continue.
I wish you every success in whichever direction you and your dear husband decide to go.
Kindest Regards, Victor L (non-professional myeloma patient)
Thank you for your response, I am pleased if I can at least offer a clear picture picture of my personal experiences during this relapse treatment.
Of course no two people are the same and for me also it is a dilemma, to have an auto stem cell transplant or not. Many medical procedures are clear cut and require no more than a signature on the authorisation document – an appendectomy for example, is an easy decision.
With myeloma it is not so easy, From my hematologist I hear only 'standard of care' and 'reference treatment', but he concedes that there is no guarantee as to the result, he explains that the transplant can give the chance of a better response in terms of the progression-free survival period, but that it may not lead to a significant improvement in overall survival and it comes at a price of course – it is invasive and can require months before life returns to normal.
Transplants have saved and prolonged many lives over the years and will continue to do so, but whereas twenty years ago there were few alternatives available, today we have some very exciting new drugs and therapies which can rival the transplants in terms of results, but without so many side effects, often enabling the patient to continue a normal lifestyle during treatment. I believe that over the coming years this trend will continue with the transplant becoming increasingly specialised and used for a more select group of patients, whilst an increasing number will require only the drug based therapies.
We should remember that the primary purpose of both of these myeloma treatment options is to slow down, to stop, and to reduce the proliferation of myeloma cells in the body. From that the benefits of symptom improvements such as bone pain, anemia and kidney problems will hopefully follow although some patients may require care for these and other secondary issues.
AnnM, your husband will probably require some months of induction therapy similar to my own. Whether he opts for the transplant or not, my personal decision was that if I saw a good response during these months, it would persuade me to avoid a transplant at this stage because I may feel that my immune system needs only some support to fight the illness. If, conversely, the response was poor, I would want to ask for at least one other drug treatment option before accepting that a transplant might be the only remaining option.
The decision is for the patient, having examined the options and having listened to the professional advice and having looked at the evidence of other myeloma sufferers. I will continue to post updates for my own treatment and I can only repeat that after the first month I am pleased with my progress which I pray will continue.
I wish you every success in whichever direction you and your dear husband decide to go.
Kindest Regards, Victor L (non-professional myeloma patient)
-
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
Hey Victor,
I relapsed this year and have been on Pomalyst for six months now. You'll find the fatigue will likely increase over time. I've had no gastro issues like I had on Revlimid. Pomalyst has been effective but has not taken me to normal levels as far as M-spike and light chains.
One thing to keep in mind, Revlimid and Pomalyst are in the same family of drugs. It's likely if we become refractory to Revlimid we'll find Pomalyst to also become refractory in short order.
The use of a stem cell transplant may be able to reset your system to allow refractory drugs to be effective again.
I relapsed this year and have been on Pomalyst for six months now. You'll find the fatigue will likely increase over time. I've had no gastro issues like I had on Revlimid. Pomalyst has been effective but has not taken me to normal levels as far as M-spike and light chains.
One thing to keep in mind, Revlimid and Pomalyst are in the same family of drugs. It's likely if we become refractory to Revlimid we'll find Pomalyst to also become refractory in short order.
The use of a stem cell transplant may be able to reset your system to allow refractory drugs to be effective again.
-
JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hi JBarnes,
Thank you for the advice, I think you are probably right because Pomalyst and Revlimid are both closely related to thalidomide. The fatigue is also certainly an issue!
I had my monthly consultation today and we are agreed that I will continue with the drug-only therapy for the time being while we see how the myeloma responds. The hematologist is happy to keep the auto transplant option on the back burner, but he said that they would not normally consider it once the patient passes 65 years of age, however he said the M-spike has responded very well for less than three weeks treatment.
I will keep you informed with the future results and thank you again. Kind Regards From Victor L
Thank you for the advice, I think you are probably right because Pomalyst and Revlimid are both closely related to thalidomide. The fatigue is also certainly an issue!
I had my monthly consultation today and we are agreed that I will continue with the drug-only therapy for the time being while we see how the myeloma responds. The hematologist is happy to keep the auto transplant option on the back burner, but he said that they would not normally consider it once the patient passes 65 years of age, however he said the M-spike has responded very well for less than three weeks treatment.
I will keep you informed with the future results and thank you again. Kind Regards From Victor L
-
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
Second consultation during relapse and a small problem with red blood cells.
Hello,
I have completed the first month of treatment with Pomalyst (pomalidomide, Imnovid), dex and cyclophosphamide and, as mentioned previously, the first 21 days of treatment produced a good reduction in my M-spike.
I have decided that my principal enemy is the fatigue following the cyclophosphamide each week, and I am making a strong effort to avoid sleeping too much during the day and to try to remain active. I am convinced it is better for the circulation and the heart to keep on the move and it seems to be helping.
A new problem arrived yesterday with my weekly blood test – a fall in red blood cells to 4,800,000 and hemoglobin down to 14.4, still well within limits, but with a written remark indicating anisocytosis. I visited the family doctor today and he confirmed that it is an effect of the treatment and that if it falls below 12 for the hemoglobin, I must have an injection of Neorecormon (erythropoietin), which was supplied at the start of treatment and is sleeping in my refrigerator at this moment!
Briefly I would like to mention two other myeloma-related drugs I am using, although they are not being used for that purpose and I believe both have been mentioned here at the Beacon already.
The first is for my thyroid because this gland was removed last September and either the levothyroxine synthetic hormone or the thyroidectomy itself seemed to trigger my relapse, which occurred in October 2015. Research in Israel carried out by Dr Osnat Asher-Fabien shows a connection between T4 thyroid hormone and myeloma cell proliferation. She suggested changing to Cynomel (liothyronine) which is a T3 hormone. Their research shows this can work well when the myeloma is stabilized, reducing the risk of further cell proliferation. I obtained my doctor's approval to change to Cynomel and also that of my endocrinologist.
The other drug is what I use for my acid reflux. I found a recent pre-clinical (laboratory) study by a team in Italy which has found that the proton pump inhibitor lansoprazole (Prevacid, Zoton) shows effectiveness against myeloma cells when used with normal myeloma drugs, and I switched to this treatment about three months ago. This study was undertaken by a team including Andrea Canitano.
I think it can do no harm as I need both treatments in any case. I do not think clinical trials have been done. Any comments on these items of interest would be appreciated.
And so I am now in month #2 and I will keep you all informed.
Kind Regards from Victor L
Hello,
I have completed the first month of treatment with Pomalyst (pomalidomide, Imnovid), dex and cyclophosphamide and, as mentioned previously, the first 21 days of treatment produced a good reduction in my M-spike.
I have decided that my principal enemy is the fatigue following the cyclophosphamide each week, and I am making a strong effort to avoid sleeping too much during the day and to try to remain active. I am convinced it is better for the circulation and the heart to keep on the move and it seems to be helping.
A new problem arrived yesterday with my weekly blood test – a fall in red blood cells to 4,800,000 and hemoglobin down to 14.4, still well within limits, but with a written remark indicating anisocytosis. I visited the family doctor today and he confirmed that it is an effect of the treatment and that if it falls below 12 for the hemoglobin, I must have an injection of Neorecormon (erythropoietin), which was supplied at the start of treatment and is sleeping in my refrigerator at this moment!
Briefly I would like to mention two other myeloma-related drugs I am using, although they are not being used for that purpose and I believe both have been mentioned here at the Beacon already.
The first is for my thyroid because this gland was removed last September and either the levothyroxine synthetic hormone or the thyroidectomy itself seemed to trigger my relapse, which occurred in October 2015. Research in Israel carried out by Dr Osnat Asher-Fabien shows a connection between T4 thyroid hormone and myeloma cell proliferation. She suggested changing to Cynomel (liothyronine) which is a T3 hormone. Their research shows this can work well when the myeloma is stabilized, reducing the risk of further cell proliferation. I obtained my doctor's approval to change to Cynomel and also that of my endocrinologist.
The other drug is what I use for my acid reflux. I found a recent pre-clinical (laboratory) study by a team in Italy which has found that the proton pump inhibitor lansoprazole (Prevacid, Zoton) shows effectiveness against myeloma cells when used with normal myeloma drugs, and I switched to this treatment about three months ago. This study was undertaken by a team including Andrea Canitano.
I think it can do no harm as I need both treatments in any case. I do not think clinical trials have been done. Any comments on these items of interest would be appreciated.
And so I am now in month #2 and I will keep you all informed.
Kind Regards from Victor L
-
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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