Hello TerryH,
Good to hear from you. It is a very valid point that you have raised, the possibility of the DVT. Although I have experienced thrombosis-type incidents in the past, these have been confined to the forearm, and always during treatment periods involving Revlimid and/or Velcade. At this point it is possible that the swollen ankle may have been caused by a prolonged period of traveling by car – one thousand miles spread over two days. As mentioned, the swelling improved and indeed disappeared completely as soon as normal activities were resumed.
The following points are worth noting for our future reference: Next time, request a 'doppler' type ultrasound without delay, and, second, avoid the use of any 'anti-inflammatory' type of treatments whilst taking the Pomalyst and dexamethasone, or similar. I have also noticed that prolonged use of Lovenox (enoxaparin) can also cause swelling in the feet and legs according to advice relating to side effects.
On the subject of the effectiveness of this treatment regimen in reducing the M-spike, I witnessed a similar response back in 2012 when I received Revlimid, Velcade, and dexamethasone. The disease level fell very quickly and then leveled off, leaving a single-figure M-spike, which fell further during a one year period of maintenance therapy involving Revlimid 10 mg every day. This was continued until 2013, after which I was without any treatment until my current relapse began immediately following my thyroidectomy in September 2015.
The current Pomalyst-based treatment will continue until January 2017, or six months of treatment, at which time the team at Toulouse will make their recommendations based on my blood test results. This may involve a maintenance period, or perhaps a different treatment. I am not refractory to Revlimid, and the drug Darzalex has been discussed as an option.
I hope this information will be of interest. Thank you also K_Shash for your good wishes – it is very kind of you!
Kind Regards,
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
Thanks for the follow-up information, Victor, and good luck with the next round of lab tests. I hope you get great results.
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Currently on my initial treatment of Revlimid, Velcade, and dexamethasone with very good success (currently 5th cycle and all numbers are in the normal range). Although I am struggling with foot neuropathy. My oncologist lowered the Velcade and Revlimid (now 10 mg daily) dosage, but still quite bothersome. And if I do maintenance, I may opt for dosage less than the 10 mg. Anyway, I appreciate reading about the relapse time-frame and strategies.
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Kebo - Name: Kebo
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2008
- Age at diagnosis: 51
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hi Kebo,
Good to hear from you.
At the time of writing, I am experiencing a probable side effect of this treatment, which manifested itself two days after the main dosage day, which was last Wednesday, November 30. The symptoms arrived on Friday and consisted of a sensitivity in the right lower leg. This became increasingly painful, but without any swelling or redness, which would have been characteristic of a thrombosis type problem.
By Saturday it had moved to the back of the right knee and was making walking extremely painful. On Sunday and today it has become a definite line of high level pain extending from the right heel, the calf muscle – which looks normal, but is painful to touch – the back of the knee, which is the main focal point of the pain, and into the thigh muscle.
There is no evidence of this being a bone type of pain and it can be best described as a stress in the muscles / tendons, I cannot rule out the possibility that it could be nerve related, but my belief is that it is some inflammation of the muscles. The only plus point is that it disappears quickly and completely if I sit down or relax on the bed, returning very quickly if I stand or walk. Of some significance is the fact that walking downhill is easier than walking uphill, the latter causing the angle of the foot to be less than 90° and it feels that the calf muscle at the back of the leg is being painfully stretched.
I have a daily visit from the nurse for my blood-thinner injections (Lovenox), and she will keep my doctor informed.
Kind Regards from Victor L
Good to hear from you.
At the time of writing, I am experiencing a probable side effect of this treatment, which manifested itself two days after the main dosage day, which was last Wednesday, November 30. The symptoms arrived on Friday and consisted of a sensitivity in the right lower leg. This became increasingly painful, but without any swelling or redness, which would have been characteristic of a thrombosis type problem.
By Saturday it had moved to the back of the right knee and was making walking extremely painful. On Sunday and today it has become a definite line of high level pain extending from the right heel, the calf muscle – which looks normal, but is painful to touch – the back of the knee, which is the main focal point of the pain, and into the thigh muscle.
There is no evidence of this being a bone type of pain and it can be best described as a stress in the muscles / tendons, I cannot rule out the possibility that it could be nerve related, but my belief is that it is some inflammation of the muscles. The only plus point is that it disappears quickly and completely if I sit down or relax on the bed, returning very quickly if I stand or walk. Of some significance is the fact that walking downhill is easier than walking uphill, the latter causing the angle of the foot to be less than 90° and it feels that the calf muscle at the back of the leg is being painfully stretched.
I have a daily visit from the nurse for my blood-thinner injections (Lovenox), and she will keep my doctor informed.
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
Hello again,
An important update if anyone experiences symptoms similar to those I have described in the previous post. Thanks, TerryH, for mentioning this in your earlier post too.
This morning I awoke to find my lower right leg and ankle swollen very noticeably. Fortunately, I had already visited the family doctor yesterday, and he had referred me to the local cardiologist who very kindly found a place for me this morning. I was given an ultrasound 'doppler' examination, which revealed a typical problem similar to that experienced during prolonged periods of driving / flying. This is almost certainly caused by the medications I am receiving. Left untreated, there could be a risk to the heart and lungs.
The New Treatment: I will stop the daily injections of Lovenox (enoxaparin) 0.4 ml, which have been given for the past five months. The Lovenox injections will be replaced by injections of Innohep (tinzaparin) 18000, the first injection being given today in the cardiology department.
I do not think it is my imagination, but already I am noticing a reduction in the pain and I was able to walk around the town centre this afternoon to visit the pharmacy without too much difficulty, even if I was walking with a Walter Brennan-type limp !
Finally, I also was prescribed an elastic 'Venoflex' support sock for the foot and lower leg.
Regards from Victor L.
An important update if anyone experiences symptoms similar to those I have described in the previous post. Thanks, TerryH, for mentioning this in your earlier post too.
This morning I awoke to find my lower right leg and ankle swollen very noticeably. Fortunately, I had already visited the family doctor yesterday, and he had referred me to the local cardiologist who very kindly found a place for me this morning. I was given an ultrasound 'doppler' examination, which revealed a typical problem similar to that experienced during prolonged periods of driving / flying. This is almost certainly caused by the medications I am receiving. Left untreated, there could be a risk to the heart and lungs.
The New Treatment: I will stop the daily injections of Lovenox (enoxaparin) 0.4 ml, which have been given for the past five months. The Lovenox injections will be replaced by injections of Innohep (tinzaparin) 18000, the first injection being given today in the cardiology department.
I do not think it is my imagination, but already I am noticing a reduction in the pain and I was able to walk around the town centre this afternoon to visit the pharmacy without too much difficulty, even if I was walking with a Walter Brennan-type limp !
Finally, I also was prescribed an elastic 'Venoflex' support sock for the foot and lower leg.
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
Hello my friends,
End of Year Update and Electrophoresis Results
I had my full blood test yesterday and received the results this afternoon. A nice gift for Christmas to see a substantial improvement in the M-spike, which resumed its downward movement following the hiccup which occurred last month when it had gone up from 7.0 to 10.0 g/l (0.7 to 1.0 g/dl). This month saw a very welcome fall back to 6.8 g/l (0.68 g/dl); this is the lowest it has been since the start of treatment six months ago.
My comments for December?
First, my DVT / thrombosis problem now seems to be 100% 'cured' after two weeks with the new blood thinning treatment.
It would appear that the upward movement in the M-spike was probably caused by the temporary interruption in my Pomalyst / cyclophosphamide / dexamethasone treatment in October due to the hematologist being on holiday and the arrival of my DVT problem. In short, four weekly doses of cyclophosphamide were delayed or missed. It may sometimes seem to be a difficult treatment, but I can see that if it is getting results then the short term side effects are worth putting up with. If, like me, you have the cyclophosphamide EVERY seven days, it is best not to miss doses without good reason. Lesson learned!
January will be my fifth anniversary since diagnosis and nearly nine years since the myeloma symptoms became evident.
Happy Christmas and I hope 2017 will bring good news and good results for everybody.
Victor L
End of Year Update and Electrophoresis Results
I had my full blood test yesterday and received the results this afternoon. A nice gift for Christmas to see a substantial improvement in the M-spike, which resumed its downward movement following the hiccup which occurred last month when it had gone up from 7.0 to 10.0 g/l (0.7 to 1.0 g/dl). This month saw a very welcome fall back to 6.8 g/l (0.68 g/dl); this is the lowest it has been since the start of treatment six months ago.
My comments for December?
First, my DVT / thrombosis problem now seems to be 100% 'cured' after two weeks with the new blood thinning treatment.
It would appear that the upward movement in the M-spike was probably caused by the temporary interruption in my Pomalyst / cyclophosphamide / dexamethasone treatment in October due to the hematologist being on holiday and the arrival of my DVT problem. In short, four weekly doses of cyclophosphamide were delayed or missed. It may sometimes seem to be a difficult treatment, but I can see that if it is getting results then the short term side effects are worth putting up with. If, like me, you have the cyclophosphamide EVERY seven days, it is best not to miss doses without good reason. Lesson learned!
January will be my fifth anniversary since diagnosis and nearly nine years since the myeloma symptoms became evident.
Happy Christmas and I hope 2017 will bring good news and good results for everybody.
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
That's great news, Victor, and a reason to really celebrate the holidays this year!
My best to you, and I hope that the downward M-spike keeps on keeping downward.
My best to you, and I hope that the downward M-spike keeps on keeping downward.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Thank you Mike F! I am sure 2017 will be an important year for us. My Best Wishes to you too.
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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
End-of-Year Consultation
Hello my friends,
I have had my final consultation of 2016 and my hematologist was impressed with the latest reduction in the M-spike as detailed in my earlier post. I will now continue the Pomalyst, cyclophosphamide, and dexamethasone regimen for an extended period of three more months in order to see if the improvement continues. I have also received, this week, a further blood test result showing that I am no longer anemic, at least for the moment.
Kind Regards,
Victor L
Hello my friends,
I have had my final consultation of 2016 and my hematologist was impressed with the latest reduction in the M-spike as detailed in my earlier post. I will now continue the Pomalyst, cyclophosphamide, and dexamethasone regimen for an extended period of three more months in order to see if the improvement continues. I have also received, this week, a further blood test result showing that I am no longer anemic, at least for the moment.
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
Interesting side effect / bonus effect of my current treatment?
Hello,
Perhaps two years ago I noticed a small but significant 'mole' on my inner left leg, just below the knee, almost black and slightly raised. The appearance concerned me sufficiently that I mentioned it to the family doctor as well as my hematologist. It was examined with an optical aid and the verdict was that for now we should keep a regular check on it and reserve the option of a biopsy at a later date.
Last week I said to my wife that it was changing, the almost black colour had lightened and the mark had become level with the surrounding skin.
Today it has gone, completely, I cannot find a trace of it ! I can only imagine that this must be connected with the treatment which appears to have 'killed off' some abnormal cells, even if they may have been benign. I find this little incident encouraging.
Kind Regards,
Victor L
Hello,
Perhaps two years ago I noticed a small but significant 'mole' on my inner left leg, just below the knee, almost black and slightly raised. The appearance concerned me sufficiently that I mentioned it to the family doctor as well as my hematologist. It was examined with an optical aid and the verdict was that for now we should keep a regular check on it and reserve the option of a biopsy at a later date.
Last week I said to my wife that it was changing, the almost black colour had lightened and the mark had become level with the surrounding skin.
Today it has gone, completely, I cannot find a trace of it ! I can only imagine that this must be connected with the treatment which appears to have 'killed off' some abnormal cells, even if they may have been benign. I find this little incident encouraging.
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
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