Hi,
I am new to this forum and have been searching recently for any information I can gather on my latest prognosis on my condition
I have now been diagnosed with anaplastic myeloma just after receiving a clean bill of full chemical remission after my 3 stem cell transplant in 2.5 years.
My background is I live in Brisbane Queensland Australia
First diagnosed with multiple myeloma in March 2013 after going through a lot of back pain and rib pain with Category 3. Was instantly put on a VCAD protocol for about 3 months in hospital with radiation therapy on my lower L5 vertebrae with a fully developed tumor and multiple lesions on the ribs and femurs. Continued outpatient treatment for preparation of my own stem cell mobilisation which was carried out in September 2013. Had stems replaced twice that year as my haematologist was not happy with my levels after the first transplant.
Had almost complete remission – slight protein trace levels in early 2014 and did a mixture of thalidomide and Zometa maintenance with then changing to Revlimid and Zometa therapy till the multiple myeloma regressed in August. Paraprotein levels jumped quickly to 28 g/L (2.8 g/dL).
Started with the DPACE regimen in September. Tough going in and out of hospital with infections 3 PICC failures and 2 double portacath failures. It took me nearly 6 months to complete my DPACE – a new record at my local clinic/hospital. My face is etched in the nurses minds.
Sorry I am nearly at the end of my story.
I finished my latest stem transplant in July and did my recovery. Started feeling good again and went back to work still doing Revlimid and Zometa maintenance treatment with a clear chemical remission to my credit. Then the kicker. I started to develop a swelling above my portacath in my chest and also a swelling below my waistline where all my Clexane and stimulant injections were given for the stem cell collection and transplants.
Initially it was thought that the portacath was extravasating, so it was agreed to replace it and remove some tissue, as the swelling was pushing on my throat.
This was done and and mind was at rest until the call to come back in for more tests – PET scan, as the biopsy had shown up as a new form of anaplastic myeloma. It was shown in 4 places via the PET.
Since then marrow tests blood and urine show no multiple myeloma, but radiation was used to target the sites to reduce them down, which has worked, but now I have started with the VCAD protocol again and here I am in hospital again with a staph infection from my latest PICC, now removed, and thankfully they are using the port and it bleeds (hooray).
Anyway, what I am asking is if anyone has further information or perspectives related to anaplastic myeloma, as there is not a lot of info on it, and if there are some studies around about it developing in working access sites in the body.
Tom
Forums
4 posts
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Bundy27 - Name: Thomas
- Who do you know with myeloma?: Not many people other than patients
- When were you/they diagnosed?: March 2013
- Age at diagnosis: 54
Re: Anaplastic multiple myeloma
Hello Tom,
Sorry to hear about your anaplastic myeloma diagnosis.
I was diagnosed with it in September 2011.
My oncologist told me from the beginning that with anaplastic myeloma, there was good news and bad news.
The bad news was that anaplastic was more aggressive than multiple myeloma, the good news is that it is more easily treated than multiple myeloma.
He also told me that anaplastic myeloma is very rare and that my case was the "talk of the oncologists'" meetings" at the local hospital for a time. Now, all of the oncologists I've met with describe my disease as multiple myeloma, even though I'm sure they know it is anaplastic myeloma.
My anaplastic myeloma presented initially as 3 tumors in my spine, fracturing those vertebrae, also another single tumor in my right hip. These areas still cause a lot of discomfort.
Initial treatment was radiation therapy, 2 or 3 times a week, for about 6 weeks.
After that, I started chemo for a few months.
Did a bone marrow transplant (auto) in May of 2012 with good results.
Have been on Revlimid for over 4 years now. Started with 25 mg - 3 weeks on, 1 week off, for about a year and a half. Have been on 10 mg Revlimid daily since.
My blood work has been very good for the last 4 years.
I now do blood work and visit my oncologist every 3 months.
I feel good enough to still work full time, even though my physical stamina has suffered quite a bit. The Revlimid side effects have been a lack of energy (stamina), and a lot of foot pain. Really not much else in way of side effects. These side effects are more than tolerable for me given the alternatives to not using Revlimid.
All of this has hit my wife pretty hard, that has been a difficult "side effect" for me.
From the very beginning of my diagnosis, I was determined to not dwell on this situation.
I believe that this helps maintain my positive attitude. I pay no attention to blood work results. I don't want be fixated on the details. I don't talk to anyone about anaplastic myeloma.
You are the first person I've actively communicated with (other than my wife) since my diagnosis. I hope this correspondence finds you in a good frame of mind and I hope you are able to handle your situation.
Good Luck
Dick C.
Sorry to hear about your anaplastic myeloma diagnosis.
I was diagnosed with it in September 2011.
My oncologist told me from the beginning that with anaplastic myeloma, there was good news and bad news.
The bad news was that anaplastic was more aggressive than multiple myeloma, the good news is that it is more easily treated than multiple myeloma.
He also told me that anaplastic myeloma is very rare and that my case was the "talk of the oncologists'" meetings" at the local hospital for a time. Now, all of the oncologists I've met with describe my disease as multiple myeloma, even though I'm sure they know it is anaplastic myeloma.
My anaplastic myeloma presented initially as 3 tumors in my spine, fracturing those vertebrae, also another single tumor in my right hip. These areas still cause a lot of discomfort.
Initial treatment was radiation therapy, 2 or 3 times a week, for about 6 weeks.
After that, I started chemo for a few months.
Did a bone marrow transplant (auto) in May of 2012 with good results.
Have been on Revlimid for over 4 years now. Started with 25 mg - 3 weeks on, 1 week off, for about a year and a half. Have been on 10 mg Revlimid daily since.
My blood work has been very good for the last 4 years.
I now do blood work and visit my oncologist every 3 months.
I feel good enough to still work full time, even though my physical stamina has suffered quite a bit. The Revlimid side effects have been a lack of energy (stamina), and a lot of foot pain. Really not much else in way of side effects. These side effects are more than tolerable for me given the alternatives to not using Revlimid.
All of this has hit my wife pretty hard, that has been a difficult "side effect" for me.
From the very beginning of my diagnosis, I was determined to not dwell on this situation.
I believe that this helps maintain my positive attitude. I pay no attention to blood work results. I don't want be fixated on the details. I don't talk to anyone about anaplastic myeloma.
You are the first person I've actively communicated with (other than my wife) since my diagnosis. I hope this correspondence finds you in a good frame of mind and I hope you are able to handle your situation.
Good Luck
Dick C.
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DickC - Name: DickC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Sept. 2011
- Age at diagnosis: 59
Re: Anaplastic multiple myeloma
Dear Tom and others,
I am in the Boston area, I was diagnosed with multiple myeloma in June of 2017 along with thyroid cancer (they are not worried about that at the moment) I too have been told this week that I have p53- anaplastic myeloma. I have been on several different treatment regimens along with 22 other drugs daily, many PETs, MRI's, full body X-rays, three bone marrow biopsies, 10 rounds of radiation to femur and humorous. Just a couple days ago I have been told that I have a rare myeloma called anaplastic myeloma. OMG! What's next? I will know more tomorrow, including a potential new treatment regimen.
I too had a PICC line that became infected in hospital by an IV nurse. Almost killed me. I was sick for two years and ended up having my spleen, pancreas, and gallbladder removed due to infection along with a Whipple (re-routing of pancreatic duct). I was tube fed for 6 months. When I was three years post PICC infection I was diagnosed with multiple myeloma stage three. My wife and I were devastated with the news. Coping better after 9 months, but keep on getting bad news.
I will keep you informed of my progress. How are you doing now?
Regards,
Rick
I am in the Boston area, I was diagnosed with multiple myeloma in June of 2017 along with thyroid cancer (they are not worried about that at the moment) I too have been told this week that I have p53- anaplastic myeloma. I have been on several different treatment regimens along with 22 other drugs daily, many PETs, MRI's, full body X-rays, three bone marrow biopsies, 10 rounds of radiation to femur and humorous. Just a couple days ago I have been told that I have a rare myeloma called anaplastic myeloma. OMG! What's next? I will know more tomorrow, including a potential new treatment regimen.
I too had a PICC line that became infected in hospital by an IV nurse. Almost killed me. I was sick for two years and ended up having my spleen, pancreas, and gallbladder removed due to infection along with a Whipple (re-routing of pancreatic duct). I was tube fed for 6 months. When I was three years post PICC infection I was diagnosed with multiple myeloma stage three. My wife and I were devastated with the news. Coping better after 9 months, but keep on getting bad news.
I will keep you informed of my progress. How are you doing now?
Regards,
Rick
Re: Anaplastic multiple myeloma
I hope this communique finds you and yours well.
I've been in pretty good health since my last posting. The only things that have changed are that I now get blood work done every six months and see my oncologist every six months. Last year she actually did say that I'm in remission.
So I asked her "how do we know that I still have anaplastic myeloma?" Her answer was kind of vague, which I take it to mean Revlimid is keeping me where I'm at right now. I'm okay with where I am, it's just difficult to make plans for retirement, but at least I'm here and can try to make those plans.
Best of luck to both of you.
I've been in pretty good health since my last posting. The only things that have changed are that I now get blood work done every six months and see my oncologist every six months. Last year she actually did say that I'm in remission.
So I asked her "how do we know that I still have anaplastic myeloma?" Her answer was kind of vague, which I take it to mean Revlimid is keeping me where I'm at right now. I'm okay with where I am, it's just difficult to make plans for retirement, but at least I'm here and can try to make those plans.
Best of luck to both of you.
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DickC - Name: DickC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Sept. 2011
- Age at diagnosis: 59
4 posts
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