Hello,.
Grateful find of Myeloma Beacon! I was diagnosed in or a little before May 2018. Due to different medical events / issues my myeloma was found early. I am a 10-year survivor of breast cancer currently. My oncologist saw me shortly after 2 nights and 2 1/2 days in hospital. Kidney was big issue and changed greatly in numbers pretty soon. I have anemia with this, although I have been for years a low red cell rider (they called me).
Eventually I was treated with Revlimid, Velcade, and dexamethasone (RVD), with Velcade once a week on each Tuesday. In 3 days I had a bad reaction (rash) reaction from Revlimid. I went off awhile and onto Pomalyst. In 8 days I had a full blown rash from scalp to ankles. Bumpy, raised areas and itchy. Mouth sores also. Last was a bubbled up swelling on my forehead right in center. What a mess! Using urgent care connected to hospital. I went off Pomalyst and received treatment for reactions. Took a few weeks to heal from that.
I remain on Velcade and on dexamethasone. Take Valtrex (valacyclovir) for shingles prevention and blood pressure medication metoprolol (Toprol / Lopressor) due to dexamethasone spiking heart rate. Baby aspirin 81 mg too. Previously I have been on Synthroid since 1999.
I have fibromyalgia and chronic fatigue since 20 years. Have pain medication when needed and a muscle relaxant. Anxiety panic attacks started at 17 years of age. Eventually depression and medication for it, Wellbutrin (bupropion). Had trauma to work through in my life which in talks I attended showed trauma was reason for my thyroid condition and fibromyalgia and chronic fatigue. Worked these thru years with exercise in gym and walks. Then cancer, which I mentioned, in 2008.
All went well. No chemo either. A a car accident in 2011 left me with post concussion syndrome. Learned in a year's time to walk with balance. In 2013 I had back surgery on L3 and L4; pins and screws. In 2014, same month of November, had left knee replacement. Tried exercise in gym again but left knowing walking would be best. Weather changes bother me to flare fibromyalgia and multiple myeloma treatments currently. So walking happens once or twice a. week.
Three years ago irritable bowel syndrome (IBS) was added diagnosis that goes with fibromyalgia. Stress-related event in my life brought it on. Learned nutrition with specialist for a year so with extra changes in diet, so this is pretty under control. This knowledge has helped me with treatment a lot.
Praying, reading, and listening to other's stories is soooo helpful to me. My husband retired to be home with me. What a blessing!. He sees me better. Nice to hear.
I wash hands a lot out in public and use hand sanitizer. Also a heads-up to grandchildren about they're being sick and no visits. Socially cut back, but I am contented. If not resting I find other interests that are enjoyable.
Grateful to be here!
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Re: Multiple myeloma after 20 years of fibromyalgia & CFS
Welcome to the forum, Mitzr.
I find it interesting that you had a negative skin-related reaction to Pomalyst after you had a similar reaction to Revlimid. I wonder if that is common. For some reason, I would expect that it is, given that Revlimid and Pomalyst are in the same class of drugs.
I think what happened to you shows how important it is for there to be as many treatment options as possible for multiple myeloma. At least for now, your doctors probably will choose to avoid Revlimid and Pomalyst when trying to treat you, based on the side effects you've had. Given your heart issues, they also may delay putting you on Kyprolis until they have fully exploited both Velcade and Ninlaro.
So it's fortunate that you still have options such as Darzalex, in particular, but also Empliciti, which could possibly be combined with the Velcade and dex that you're currently on. Cyclophosphamide and melphalan also continue to be options.
Another option that could be explored at some point, assuming that you don't develop any issues with neuropathy, is thalidomide. It is true that it is in the same class of drugs as Revlimid and Pomalyst, but I don't think it is as likely to cause rashes as a side effect. So perhaps it is worth discussing with your doctors as something to add to your current Velcade-dex regimen.
Cheers!
I find it interesting that you had a negative skin-related reaction to Pomalyst after you had a similar reaction to Revlimid. I wonder if that is common. For some reason, I would expect that it is, given that Revlimid and Pomalyst are in the same class of drugs.
I think what happened to you shows how important it is for there to be as many treatment options as possible for multiple myeloma. At least for now, your doctors probably will choose to avoid Revlimid and Pomalyst when trying to treat you, based on the side effects you've had. Given your heart issues, they also may delay putting you on Kyprolis until they have fully exploited both Velcade and Ninlaro.
So it's fortunate that you still have options such as Darzalex, in particular, but also Empliciti, which could possibly be combined with the Velcade and dex that you're currently on. Cyclophosphamide and melphalan also continue to be options.
Another option that could be explored at some point, assuming that you don't develop any issues with neuropathy, is thalidomide. It is true that it is in the same class of drugs as Revlimid and Pomalyst, but I don't think it is as likely to cause rashes as a side effect. So perhaps it is worth discussing with your doctors as something to add to your current Velcade-dex regimen.
Cheers!
Re: Multiple myeloma after 20 years of fibromyalgia & CFS
In addition to what Ian suggests, my specialist also still utilizes VDd (Velcade + Doxil + Dex) as a frontline treatment with very good success. In fact, this very well may be the triplet I will start with should I progress from my smoldering stage.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma after 20 years of fibromyalgia & CFS
Hi Multibilly,
Ian can speak better to why he included and excluded specific drugs from his list However, he may have left out Doxil because of its heart-related side effects (which he mentioned in regard to Kyprolis, I assume due to the metoprolol that Mitzr is taking).
As you know, the active ingredient in Doxil is doxorubicin. A well-known and well-documented side effect of doxorubicin is heart damage in the form of cardiomyopathy. The Wikipedia article on doxorubicin describes the issue:
"The most dangerous side effect of doxorubicin is dilated cardiomyopathy, leading to congestive heart failure. The rate of cardiomyopathy is dependent on its cumulative dose, with an incidence about 4% when the dose of doxorubicin is 500–550 mg/m², 18% when the dose is 551–600 mg/m² and 36% when the dose exceeds 600 mg/m²"
https://en.wikipedia.org/wiki/Doxorubicin
Heart-related issues with Doxil may not have been much of a concern back when myeloma therapies were given for 4 cycles prior to a stem cell transplant, and when life expectancy for myeloma patients wasn't that great, meaning the focus was using anything available to get whatever life expectancy was possible.
Nowadays, therapies are being given for much longer periods of time, and life expectancy is (thankfully!) much greater. So I suspect any use of Doxil is likely to be in later lines of therapy, rather than upfront, and it still may be avoided in patients with heart issues.
Ian can speak better to why he included and excluded specific drugs from his list However, he may have left out Doxil because of its heart-related side effects (which he mentioned in regard to Kyprolis, I assume due to the metoprolol that Mitzr is taking).
As you know, the active ingredient in Doxil is doxorubicin. A well-known and well-documented side effect of doxorubicin is heart damage in the form of cardiomyopathy. The Wikipedia article on doxorubicin describes the issue:
"The most dangerous side effect of doxorubicin is dilated cardiomyopathy, leading to congestive heart failure. The rate of cardiomyopathy is dependent on its cumulative dose, with an incidence about 4% when the dose of doxorubicin is 500–550 mg/m², 18% when the dose is 551–600 mg/m² and 36% when the dose exceeds 600 mg/m²"
https://en.wikipedia.org/wiki/Doxorubicin
Heart-related issues with Doxil may not have been much of a concern back when myeloma therapies were given for 4 cycles prior to a stem cell transplant, and when life expectancy for myeloma patients wasn't that great, meaning the focus was using anything available to get whatever life expectancy was possible.
Nowadays, therapies are being given for much longer periods of time, and life expectancy is (thankfully!) much greater. So I suspect any use of Doxil is likely to be in later lines of therapy, rather than upfront, and it still may be avoided in patients with heart issues.
Re: Multiple myeloma after 20 years of fibromyalgia & CFS
Good points about Doxil Terry. But also keep in mind that the typical recommended doxorubicin dose in the Velcade, Doxil, and dexamethasone regimen (VDd) is on the order of 5-9 mg/m². So, we aren't talking about anything that comes close dose-wise to the dose levels mentioned in the Wikipedia article. But obviously, this potential side effect must be considered for any patient at any dose level of doxorubicin.
Also, I believe most myeloma doctors are now using the pegylated liposomal form of doxorubicin, which is less toxic than regular doxorubicin.
Also, I believe most myeloma doctors are now using the pegylated liposomal form of doxorubicin, which is less toxic than regular doxorubicin.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma after 20 years of fibromyalgia & CFS
Terry is right. I left out Doxil (or Caelyx, as it's known in Australia and many other countries) as a potential option because of the cardiotoxicity it may have.
I am not an expert, but I believe the doxorubicin formulation in Doxil / Caelyx decreases the peak concentration of doxorubicin in the blood for a given dose, and it also significantly increases the time the drug stays in the body.
Decreasing the peak concentration decreases the chances that the drug will cause the acute heart-related side effects seen with the standard doxorubicin formulation. I believe this is well documented.
Increasing the time the drug stays in the body makes a given dose much more effective against myeloma (also well documented). However, it also gives the drug more of a chance to cause the low-level, cumulative heart damage that I believe can occur with doxorubicin (less well documented because you need a much longer time to prove it).
So I personally would favor using the drug as a later line of therapy, rather than upfront.
For anyone who is really interested in liposomal drug formulations like Doxil / Caelyx, here is a review article about them:
https://www.sciencedirect.com/science/article/pii/S1818087613000111
Cheers!
I am not an expert, but I believe the doxorubicin formulation in Doxil / Caelyx decreases the peak concentration of doxorubicin in the blood for a given dose, and it also significantly increases the time the drug stays in the body.
Decreasing the peak concentration decreases the chances that the drug will cause the acute heart-related side effects seen with the standard doxorubicin formulation. I believe this is well documented.
Increasing the time the drug stays in the body makes a given dose much more effective against myeloma (also well documented). However, it also gives the drug more of a chance to cause the low-level, cumulative heart damage that I believe can occur with doxorubicin (less well documented because you need a much longer time to prove it).
So I personally would favor using the drug as a later line of therapy, rather than upfront.
For anyone who is really interested in liposomal drug formulations like Doxil / Caelyx, here is a review article about them:
https://www.sciencedirect.com/science/article/pii/S1818087613000111
Cheers!
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