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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Pomalyst, cyclophosphamide & dexamethasone treatment

by blueblood on Thu Jul 28, 2016 4:47 pm

Victor,

Lansoprazole is a protein pump inhibitor (PPI) which I believe is available by prescription in the U.S. Both Prilosec (omeprazole, Losec) and Nexium (esomeprazole) are PPI's and likely in the same class of drugs, but each different.

I wonder if the benefit applies to all PPIs?

blueblood
Name: Craig
Who do you know with myeloma?: Myself
When were you/they diagnosed?: March 2014
Age at diagnosis: 54

Re: Pomalyst, cyclophosphamide & dexamethasone treatment

by Victor L on Fri Jul 29, 2016 12:02 pm

Hi Blueblood,

The article I refered to was in the Beacon on April the 17th. There also was a follow-up article on April 18th.

The laboratory findings appear to be specifically in favour of lansoprazole and even states that other proton pump inhibitors do not have the effect of destroying myeloma cells.

I was first prescribed a PPI about two years ago and it was called Nexium, it worked well. I asked my family doctor if me could change to lansoprazole when I found the Beacon article. It also works very well, but with the possibility that it may have a myeloma treatment value.

Kind Regards,

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

by Victor L on Thu Aug 18, 2016 10:26 am

Completion of second month of relapse treatment.

Hello to my friends and fellow sufferers!

I have now received my blood test results for the test carried out two days ago, this being the full blood test including the electrophoresis test, the period covered is for a total of six weeks of treatment and one 'rest' week making seven weeks total. I am currently on a 'rest' week again prior to my hospital consultation next Monday after which I will theoretically start the third month of treatment and (I am told). I will recommence Zometa treatment during my hospital visit.

The results: The majority of the blood test is normal and the key items relating to the treatment show red cells increased slightly to 4,980,000, hemoglobin also slightly up at 15 g/ 100 ml.

Kidney function has improved again and stands at DFG 89 ml/min, a huge improvement com­pared with three months ago when it was in the low 60's Kidney function can definitely improve!

Calcium level remains stable at 90 mg/L.

I have no bone issues and pain levels are virtually zero.

The all important electrophoresis test has shown a second good response. Initially in June I was showing a monoclonal peak of 3.2 g/dL (35%) IgG kappa in the beta 2 region, after the first month of treatment this fell to 1.7 g/dL, and today it is down to 1.0 g/dL or 14.6%. I am obviously pleased to see these figures.

Side effects: The second month of treatment has been somewhat difficult, the fatigue has been quite profound with considerable weakness in the legs and knees limiting my trips out to essential supermarket visits, etc. I have had a quite severe chest infection diagnosed as bronchitis and requiring an oxygen machine to be installed at the house after my blood oxygen (%SPO2) fell below 85%. It is now back to the more normal 96%. I had fluid in my lungs, and even without a stethoscope, my breathing sounded like a set of bellows used for getting the fire going. I was very close to being hospitalised. I believe this infection to be a side effect of the cyclophosphamide because I experienced the same symptoms in 2012 when the same drug was used in IV form prior to stem cell collection. During the worst week I also lost 5 kg (11 lbs.) in weight. These side effects are tolerable in view of the seemingly good results being obtained.

My best wishes to you all, 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

by lys2012 on Fri Aug 19, 2016 9:15 pm

Hi Victor

Thanks for such a detailed account of your treatment. I'm following this quite closely as I'm starting treatment for my relapse in the next few months. Slightly different treatment (CyBoD), but I am almost 7 years out from my diagnosis, and have been on a long drug free remission after my original stem cell transplant in 2010.

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32

Re: Pomalyst, cyclophosphamide & dexamethasone treatment

by Victor L on Sat Aug 20, 2016 7:00 am

Hi Iys2012,

Good to hear from you and I am very happy to share my experiences and I hope this can be of continuing interest to you and our other friends.

It is good to see that you have had such a long treatment-free period. Seven years is fantastic!

I am not a great fan of the cyclophosphamide. There seems to be a predictable pattern, I take 300 mg every Wednesday, this being 6 tiny 50 mg tablets. which have little or no immediate effect but by the weekend I really do notice the effects. Today, Saturday for example, I have problems walking and it is almost like being in a semi-anaesthetised state. This typically lasts for perhaps two days and the only way to cope with it is to 'go with the flow', relax, read, and try to avoid any activities which may be too much. Of course others may be affected to a lesser degree. However, the obvious and rapid improvement in the reduced level of the disease outweighs any inconvenience from these side effects.

Other side effects seem to include some vertigo / dizziness, which can be unexpected and can last a few minutes, I find it helps to close my eyes or even to use only one eye, keeping the other eye closed or covered. These things are sent to try us! My appetite has remained good, and I have not experienced any hair loss.

I send you my very best wishes for your relapse treatment whenever it begins.

Good luck, 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

by Victor L on Wed Sep 21, 2016 10:12 pm

Relapse update having completed the third month of treatment.

Hello to my friends and fellow sufferers,

I have received my blood test results for the third month of treatment.

The electrophoresis results show a further 25% reduction in the M-spike level from last month, when it stood at 1.0 g/dL (14.6%) and is now at 0.75 g/dL (10%).

I have experienced few if any problems with the dexamethasone or the pomalidomide, but the cyclophosphamide has caused me some considerable difficulty and I plan to discuss this with my hematologist next week. The effects include loss of sensation in the legs and feet, making walking quite difficult, especially when combined with the intense fatigue. Of course, this may be a price worth paying for seeing the good results each month, but it is not easy and some adjustment in the dose would be appreciated. These side effects improve during the final week each month when the treatment 'rest period' occurs.

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

by TerryH on Tue Nov 22, 2016 6:28 pm

Hi Victor,

I saw one of your recent posts and it got me wondering how you've been doing. Is the Pomalyst regimen still working for you? Have you had any unexpected side effects?

I appreciate the information you've shared in this thread, and I hope all is going well. Good luck!

TerryH

Re: Pomalyst, cyclophosphamide & dexamethasone treatment

by Victor L on Wed Nov 23, 2016 10:38 pm

Hi TerryH,

Thank you for your interest, I will soon be writing a full update as I approach the last of the six months of the treatment. In order to respond to your question, I am very happy to explain the situation as it stands today, especially as I have had my regular monthly consultation and blood test this week.

The first three or four months of treatment produced an excellent reduction in the M-spike, which fell from around 35 g/L (3.5 g/dL) to 7 g/L(0.7 g/dL). In order to fit in with the available con­sultations, I was instructed to take a two-week treatment 'break' in October and then, because of a possible deep vein thrombosis (DVT) in my right lower leg, this turned into a three-week period without treatment. In addition, I have calculated that I went four weeks without any cyclophosphamide, which normally would be taken every week.

The DVT issue was quickly resolved at the beginning of November, and the full treatment regimen restarted three weeks ago. It was necessary to do the electrophoresis test one week ago (after only two weeks of treatment) and the results perhaps demonstrated the partial absence of treatment over the past few weeks. The M-spike, which is in the Beta-2 region, had risen from 7 to 10 g/L (1.0 g/dL), a concentration of 14% compared with 10% for the previous month.

My hematologist was a little concerned about this increase but, quite rightly, wishes to wait for the December results before making any changes to the treatment. Personally, I hope that as I am now back on the full dosage we will see the M-spike stabilise again. I have an appointment immediately after Christmas when my treatment will be changed if necessary. This week I will receive the Zometa treatment, which is given four times per year.

My other blood test results are good – slight anemia, but only as a side effect of the treatment. Physically I feel good. I have even managed a visit to the UK to enjoy some hill walking in the Peak District!

I will let you know what happens during the next month of treatment. Your views and comments would be appreciated as always.

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

by TerryH on Mon Nov 28, 2016 11:03 am

Hi Victor,

It's great to see your update. Thank you.

I'm glad that you responded well to the Pomalyst regimen, and I hope there are no long-term issues related to the DVT you experienced. I see from one of your earlier posts that you were taking an injectable anticoagulant to prevent DVTs, so it's surprising that the DVT developed. The injectable anticoagulants are usually good at preventing DVTs – better than aspirin, which is what is usually given in the States.

Were you given anything "extra" after the clot developed, to help your body make it go away?

I think it possible that you will continue to respond to the treatment regimen once you re-start it. Even if it doesn't drop the M-spike any further, it may hold it steady for a while yet.

If you do keep responding to the regimen, will you be kept on it – or some variation of it – until disease progression?

Good luck!

TerryH

Re: Pomalyst, cyclophosphamide & dexamethasone treatment

by K_Shash on Mon Nov 28, 2016 5:11 pm

Hello Victor,

I only wanted to wish you continued improvement and success with this treatment.

Look forward to your December update.

All the best.

K_Shash
Name: K_Shash
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2014
Age at diagnosis: 67

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