Thank you, Little Monkey, good to hear from you and I hope all is well with you and your father.
We have a lot to be thankful for.
Kind Regards from Victor L
Forums
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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
Problems arriving, perhaps?
My hematologist was very happy with my results at my appointment two weeks ago and decided we would stop the weekly dexamethasone 20 mg tablet.
I had my routine blood test and electrophoresis analysis this week. The general blood test items are all good, but the electrophoresis test is showing that the M-spike is showing a small increase and is now at almost 6 g/L (0.6 g/dL) In addition, I see small but now out-of-range increases in the levels of alpha 1, alpha 2 and beta 1 bands, although these are not monoclonal.
I have certainly had an intestinal-type infection over the past month, which may be affecting my kidneys and liver. For the first time, my kidney function has descended into the insufficiency region. This could be caused by the higher viscosity of my blood. The liver has shown an increase of the lacto-deshydrogenase enzyme, 50% above the normal maximum. Last but not least, C reactive protein has increased to 59 mg/L, way above the normal maximum of 5 mg/L; this I believe is indicative of an infection.
Whereas the infection will in no way be connected to the removal of the dexamethasone, this change of treatment may be connected to the result deterioration showing up in the electrophoresis analysis. Of course, the laboratory sent all of these results directly to my hematologist by fax, he would telephone me if he was unduly concerned. By the same token, he would in most cases wait for another blood test result before making any changes. Opinions ?
Best Wishes to all from Victor L.
My hematologist was very happy with my results at my appointment two weeks ago and decided we would stop the weekly dexamethasone 20 mg tablet.
I had my routine blood test and electrophoresis analysis this week. The general blood test items are all good, but the electrophoresis test is showing that the M-spike is showing a small increase and is now at almost 6 g/L (0.6 g/dL) In addition, I see small but now out-of-range increases in the levels of alpha 1, alpha 2 and beta 1 bands, although these are not monoclonal.
I have certainly had an intestinal-type infection over the past month, which may be affecting my kidneys and liver. For the first time, my kidney function has descended into the insufficiency region. This could be caused by the higher viscosity of my blood. The liver has shown an increase of the lacto-deshydrogenase enzyme, 50% above the normal maximum. Last but not least, C reactive protein has increased to 59 mg/L, way above the normal maximum of 5 mg/L; this I believe is indicative of an infection.
Whereas the infection will in no way be connected to the removal of the dexamethasone, this change of treatment may be connected to the result deterioration showing up in the electrophoresis analysis. Of course, the laboratory sent all of these results directly to my hematologist by fax, he would telephone me if he was unduly concerned. By the same token, he would in most cases wait for another blood test result before making any changes. Opinions ?
Best Wishes to all from 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
September 12, 2017 Update
I was a little apprehensive waiting for this month's blood test results, having had some figures in August which had concerned me. However, the results I received today proved yet again that numbers which go up can also come down.
The all important M-spike, which had increased to 6 g/l (0.6 g/dL) last month, has stabilised and fallen slightly to 5.6 g/L (0.56 g/dL)
The MDRD test which last month had fallen to an all time low of 55 ml/min, taking me into the first stage of renal insufficiency, this month recovered to 66 ml/min, back into safe territory.
C reactive protein had zoomed up to 11 times the normal maximum at 59 mg/L. This month it was back within the reference range at just 4 mg/L
The LDH reading, which had also been well above normal at 355 UI/L, has fallen to 289 UI/L, which although still above the reference maximum of 225 UI/L, is certainly moving in the right direction.
I had been anxious to see increases in the Alpha 1, Alpha 2 and Beta 1 figures in the electrophoresis test, all three had gone out of the reference range and they had appeared on the graph as very noticeable peaks. This month they were back within the normal range, and the electrophoresis printout looked refreshingly normal apart from the small monoclonal peak in the Beta 2 region.
I have now reached the 24-month mark since the relapse began, and I have to admit that I feel much improved without the weekly dexamethasone. Taking the Pomalyst alone seems to produce very few side effects.
Next week I will have an injection of Prevenar 13 followed by a Pneumovax injection in October or November. This is to protect against the danger of lung infections as winter approaches.
Best Wishes to all,
Victor L
I was a little apprehensive waiting for this month's blood test results, having had some figures in August which had concerned me. However, the results I received today proved yet again that numbers which go up can also come down.
The all important M-spike, which had increased to 6 g/l (0.6 g/dL) last month, has stabilised and fallen slightly to 5.6 g/L (0.56 g/dL)
The MDRD test which last month had fallen to an all time low of 55 ml/min, taking me into the first stage of renal insufficiency, this month recovered to 66 ml/min, back into safe territory.
C reactive protein had zoomed up to 11 times the normal maximum at 59 mg/L. This month it was back within the reference range at just 4 mg/L
The LDH reading, which had also been well above normal at 355 UI/L, has fallen to 289 UI/L, which although still above the reference maximum of 225 UI/L, is certainly moving in the right direction.
I had been anxious to see increases in the Alpha 1, Alpha 2 and Beta 1 figures in the electrophoresis test, all three had gone out of the reference range and they had appeared on the graph as very noticeable peaks. This month they were back within the normal range, and the electrophoresis printout looked refreshingly normal apart from the small monoclonal peak in the Beta 2 region.
I have now reached the 24-month mark since the relapse began, and I have to admit that I feel much improved without the weekly dexamethasone. Taking the Pomalyst alone seems to produce very few side effects.
Next week I will have an injection of Prevenar 13 followed by a Pneumovax injection in October or November. This is to protect against the danger of lung infections as winter approaches.
Best Wishes to 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
It's great that your paraprotein level (M-spike) is holding steady, Victor. Thanks for the update.
Do you get your serum free light chain levels checked on a regular basis? Free light chain results can be rather noisy, but they probably are a bit better than your paraprotein level in detecting changes in your overall disease level.
You also may want to go back and see if your haemoglobin and uninvolved immunoglobulin levels show any signs of giving you insight into what is going on with your myeloma. Ditto for things like platelet levels and beta-2 microglobulin.
Cheers!
Do you get your serum free light chain levels checked on a regular basis? Free light chain results can be rather noisy, but they probably are a bit better than your paraprotein level in detecting changes in your overall disease level.
You also may want to go back and see if your haemoglobin and uninvolved immunoglobulin levels show any signs of giving you insight into what is going on with your myeloma. Ditto for things like platelet levels and beta-2 microglobulin.
Cheers!
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hi Ian,
Thank you for making these very good points, and you have certainly reminded me to discuss these items at my next appointment, which is at the end of the year. All my tests are examined at the Hematology Unit in Toulouse, and I am assured that if anything untoward shows up they will contact me without delay.
Kind Regards from Victor L
Thank you for making these very good points, and you have certainly reminded me to discuss these items at my next appointment, which is at the end of the year. All my tests are examined at the Hematology Unit in Toulouse, and I am assured that if anything untoward shows up they will contact me without delay.
Kind Regards from 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
October 2017 Update
This month's blood test results have shown a near 20% fall in the M-spike, which is now 4.7 g/L (0.47 g/dL).
A new symptom this month has been an irritation of the skin on my left forearm. Scratching would make it much worse, and our family doctor prescribed betamethasone cream which is applied at the first sign of trouble. This treatment seems to work well. I wonder if this problem could be a side effect of the Prevenar 13 vaccine which I received last month.
Kind Regards to all,
Victor L
This month's blood test results have shown a near 20% fall in the M-spike, which is now 4.7 g/L (0.47 g/dL).
A new symptom this month has been an irritation of the skin on my left forearm. Scratching would make it much worse, and our family doctor prescribed betamethasone cream which is applied at the first sign of trouble. This treatment seems to work well. I wonder if this problem could be a side effect of the Prevenar 13 vaccine which I received last month.
Kind Regards to 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,
Thank you for your incredible posts that continue to keep us updated on your journey. I am smoldering, but find it helpful to see what options others are doing and how well folks are tolerating the treatment.
Continue to feel well and I hope you stay infection free this winter.
Eileen
Thank you for your incredible posts that continue to keep us updated on your journey. I am smoldering, but find it helpful to see what options others are doing and how well folks are tolerating the treatment.
Continue to feel well and I hope you stay infection free this winter.
Eileen
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Eileenk - Name: Eileen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Smoldering, September 2017
- Age at diagnosis: 49
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hello Eileen,
Thank you for your kind and supportive comments. I must say that at this point, Pomalyst has certainly exceeded my expectations. It will be interesting to see what the coming months bring.
I hope all goes well with your smoldering myeloma and that it remains in that state for a very long time!
Kind Regards, Victor L
Thank you for your kind and supportive comments. I must say that at this point, Pomalyst has certainly exceeded my expectations. It will be interesting to see what the coming months bring.
I hope all goes well with your smoldering myeloma and that it remains in that state for a very long time!
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
December 2017 Blood Test Results & Consultation
My latest electrophoresis results show an M-spike remaining at or around 4.5 g/L (0.45 g/dL) for the third month. All of my other blood test figures are normal as I enter the 7th year since diagnosis, and my hematologist is happy to continue my prescribed treatment of 4 mg of Pomalyst daily together with Zometa every three months and an injection of Innohep (tinzaparin) each day to counter the risk of thrombosis. I am not suffering any noteworthy side effects.
Very Best Wishes to everyone for Christmas and the New Year.
Victor L.
My latest electrophoresis results show an M-spike remaining at or around 4.5 g/L (0.45 g/dL) for the third month. All of my other blood test figures are normal as I enter the 7th year since diagnosis, and my hematologist is happy to continue my prescribed treatment of 4 mg of Pomalyst daily together with Zometa every three months and an injection of Innohep (tinzaparin) each day to counter the risk of thrombosis. I am not suffering any noteworthy side effects.
Very Best Wishes to everyone for Christmas and the New Year.
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,
It looks like your M-spike has plateaued and is remaining very steady at about 5 g/l (0.5 g/dL). That's great. Your M-spike could stay there for a long time. I hope that's the case, and that you continue to avoid any noticeable side effects.
Cheers!
It looks like your M-spike has plateaued and is remaining very steady at about 5 g/l (0.5 g/dL). That's great. Your M-spike could stay there for a long time. I hope that's the case, and that you continue to avoid any noticeable side effects.
Cheers!
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