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Re-occurring plasmacytoma in a different location

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

Is there anyone that has had re-occurring plasmacytoma in a different location. This is my second bout. First was in my back (2002)and now I start treatment in my hip. My doctor says it is very unique specimen to have another singular tumor in a different location. The hope is way eliminating the tumor will also eliminate the neuropathy that has developed over the last several months in my legs, arms and back.

I have many questions but I know that they can not be answered by the medical field but may somone out there knows or has had re-ocurring plasmacytoma.

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

I'm not sure that this is the place for me to express my feeling but here to goes. I'm feeling alone, even with a lot of support from my wife, family and friends. Today was my first radiation treatment for the tumor in my right hip. They gave me the same room and the same Tec as in my 2002 treatment for my back tumor. This time it should be only 18 days compared to 35 days before. I asked the nurse, who has work there for 30 years, when was the last time she had treat re-occurring plasmacytoma in a different location. She thought for a minute and replied "I had several plasmacytoma this year but in my 30 years I've not had a re-occurring plasmacytoma in a different location. This was information that I was told by my doctor and many hour of research by myself and my wife that my cancer was unique and very little written. This should not have been a shock. Just another resource giving me information I already have. As my wife and I left Legacy Cancer Center it hit me like a brick wall. Tears can to my eyes. As I cried I told my wife that I felt so alone. Not the alone of having her near me but the alone that I have nothing that no can tell me how to handle the pain or will it so away or is the neuropathy caused by the tumor or how do I know if it has returned.
My thoughts are jumping around and I’m not a writer. I type with two fingers so it is slow going to get my thoughts out on paper. I’ll be back. May be I’ll start from the beginning Sept 22, 2002. “YOU HAVE A TUMOR IN YOUR BACK”.

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

Guess I’m over the feeling sorry for myself for now. It is Christmas time and time to share joy and happiness. Last night my wife and friends went to Zoo Lights. Just as it sounds the Zoo is decorated in Christmas light. With the neuropathy I can’t walk very far but the Zoo has rental wheel chairs. Now that was a new experience. I had a feeling of lost on control when my wife was pushing and controlling the wheelchair. At first I just wanted to get out of the wheelchair and walk. I have the control of my limbs. Wrong, I realized that I don’t and I need help to see the beautiful Christmas scenes. It was a short lived downer. It became fun. My wife didn’t know how to steer, so at times we would hit walls, run into doors that were narrow and laugh about it. It was a very enjoyable time. Have to leave now for my second treatment.

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

After the treatment yesterday I met with the doctor that gave me my first radiation treatment in 2002. My new doctor was on vacation and it was just the luck of the draw because he works at another location. We talk about the last treatment and the new treatment and my question was “are there reports or information on a re-occurring plasmacytoma in a different location.” His answer was that in the cases he has had, when you have a re-occurrence it becomes Multiple Myeloma. My plasmacytoma will be treated as the first on was and I should be fine. I guess my questions are not answerable. How do you reply to me questions when there isn’t any information or reports?
I give thanks to my Angels and Spirits that they have cared for me and made me safe. I give thanks to the medical staff for the treatment and care they are providing me. Most of all I give thanks for my loving wife, for the help and guidance she gives. I also thank my friends and family for their support. I must be on my way for now, treatment #3.

Laura88
Posts: 47
Joined: Oct 2009

Hello -- I love your posts. Well, I'm sorry you had to post them in the first place, but I am touched by your positiveness and your thanks to all who are helping you through. Please excuse my ignorance but I am not sure what plasmamytoma is -- I have lung cancer. After 6 mos of treatment two weeks ago they told me remission. I had a PET to see if I was again a surgical candidate and it showed an abnormality in the pelvic bone. I now have to go for an MRI, so I am very, very scared it is bone cancer of some sort. MRI is next week -- we'll see. In the meantime, I wanted to let you know you are in my prayers, as I'm betting I will be in yours now.

Zoo lights -- you are not in MA by any chance are you? I live very close to Zoo lights in Stoneham and I get my treatment at MGH. Could we be neighbors? Best wishes to you and your family, Laura

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

Thanks you for writing. I live in Portland, Oregon.

To answer your question, Plasmacytoma is a single tumor on the bone or in soft tissue. I have the bone type. I've never had a PET scan but in the last 4 months I've had 6 MRI's. I understand the scared part. The word cancer and the unknown are not easy to handle. It changes your life and how you look things. Many years ago I had a very close friend who died of cancer. In his last days, he said "Roger, look at the dog woods, spent time with nature and enjoy life." These are words that I have tried to live by.

When I have a MRI, I get into a very deep meditation. I go to the peace and tranquility of the dog woods. I try to enjoy as much time as I can. I’m not always successful, but I try.

What day do you have your MRI? If you want to talk more about cancer or anything I’ll be here.

You are in my prayers. May the Angels help your healing.

Roger

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

Treatment went good. I’m having a difficult time standing up. More pain in the legs and walking is harder. Numbness in my arms has increased and moving to shoulders (both arms).

We had a Christmas party on Saturday night. It was very enjoyable to have our friends at our home. Christmas time is and has been my most enjoyable time of the year. As I gotten older, I been told I look like Santa. The gray beard and hair but I just can’t wear the red suit. I think it is all in the twinkle in my eyes and my smile. May the Angels keep all of our families and friends in good health.

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

Today was the day they did an x-ray. They said everything was okay. I was very tried today. Pain was high with shooting pain in my back and legs. My neuropathy is really bad also. It wasn’t a good day, even hard to type.
We went the movies today and saw a “Christmas Carol” in 3D. The movie was good but I couldn’t enjoy the entire movie. Shooting pain made it impossible to sit still and concentrate.

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

Another day. I have to learn about over reaction to what is said. It is not the nurses fault that no one understands re-occurring plasmacytoma. I ask a question about yesterdays pain and why. A question that my doctor couldn't reply to and I get get upset with no answer. It's no ones fault that I'm sick. Learning how to understand anger is hard, mostly when there is no one to point at.

Laura88
Posts: 47
Joined: Oct 2009

I have not had time to respond but I have been following your treatment updates. I think it's wonderful that you and your wife go to the movies -- it sounds like you are trying to do everything you possibly can to keep life "normal". Congratulations to you for this -- so many people do not do this and I think it's so very important. I'm very sorry you are having a hard time right now with all this -- certainly an awful blow. If I'm right, you've had this before? And beaten it? Please just keep using posts as a way of venting. We will all be here for you.

For me -- well I had my MRI two days ago -- no results yet that I have heard. I may be burrying my head in the sand, but I'm feeling no news is good news. If I don't hear tomorrow I will probably call.

Happy, happy holidays to you and your family. I know you had a Christmas party last week -- hope you have some fun things to do this week. Take care and stay strong -- Laura

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

Your right, I did have a plasmacytoma on my spine in the center of my back (T7&T8), Sept 2002. Treatment removed the tumor and back surgery rebuilt my back so I could walk. Been cancer free until several months ago. I did beat it before and will again. I is very hard to keep life as normal but we have tried the best we can. We don't tell everyone as we have our own business. I don't avoid telling people but the cancer is not who I am.

I hope your MRI reports are good news. Please let me know. My experience is if there is bad news it comes fast so I'm betting on good news.

Have a great holiday, Roger

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

This was the day I had a meeting with my radiation doctor.I was told that re-occurring plasmacytoma in a different location only has 13 reported occurrences. We talked about how the treatment was determined and how follow-up is going to be setup. I don't know why but it made me feel good. Like a wieght had been removed my shoulders. A very very good day.

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

It is the last day of the week and two days rest from radiation. Pain has been lower today but I haven’t been out and about today. I have a high pain threshold and as the neuropathy gets worse it becomes what the normal is. What I mean is that living within this body has some pain involved. When the pain is a daily level and as that level increases the normal becomes what level. It hard to remember or gage what pain level is. There are two ways for me to determine if I need a pain reliever. First is if I can’t function or work on the computer. Second or maybe it should be first, is when my wife tells it time for me to take a pain pill. She knows me the best and can tell if I’m in pain. Think I would know first but not always. Maybe it is a man thing or I just block out the start of the pain but she is right 100% of the time. It is hard not to agree with her with that percentage.

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

Nine is the haft way point for the radiation. Radiation is not painful. It is the side effects. I don’t know that is correct statement. Is the neuropathy increasing because of the tumor or the radiation? Doctors are not sure but the pain of walking and now needing a cane that causing more pain in the hands and arms has not been fun.

It’s a rainy day – look at how beautiful the trees are.

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

It has been about a year since I had the re-occurring plasmacytoma. I had been getting better but the late few months the same pain and neuropathy has returned. I had a CT scan and full skeletal x-ray plus lab test and they all return back with no indication of cancer. This is the same results as last year, with the doctor saying that there isn’t any cancer. Last week I had a full spine and hip MRI, 3 hrs of fun and relaxation. The results are similar to last years with a new lesion near the lesion of last year. My oncologist wants another MD to review my records because my tests and symptoms do not fit the medical definition of plasmacytoma. Nothing has been said about a biopsy. Think we all need to confer on how to determine what the next step is. Hope to have some information in the next few days.

MrBobC's picture
MrBobC
Posts: 17
Joined: Oct 2010

I can relate to the MRI time. I usually go to sleep and worry I will snore or something else will happen that is embarrassing!

Correct diagnosis is too important to chance. If in doubt, get another opinion. If I had listened to my family doctor just before I got diagnosed I probably wouldn't be here...he said it was gout and not to worry. The second opinion sent me for additional testing and then to the oncologist. The first doctor is no longer my family doctor.

I hope and pray that you get good information and it is in your favor!

Bob

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

Yesterday I had an office visit with the MD for a Second opinion. It is confirmed that I have multiple myeloma, possible “POEMS Syndrome”. Very Rare!

Lots of blood tested yesterday, Bone marrow test on Friday and a pet scan Monday. The Scan well takes about two hours. Another morning of very deep meditation, it’s the only way I have done long hours of test over the past 8 years.

I have mixed feelings about what is good and bad information. I have known that I had multiple myeloma since the beginning. My wife really wanted to believe it was a single plasmacytoma in 2002 and I was in remission till last year. Now two more spots on my hip with the last MRI. Is naming it “POEMS Syndrome” helpful? They can call it anything they want as long as that name will give them information.

Once all the info is in then we can look at ways to treat the problem. Pain management is the first step or now to reduce the pain level. Quality of live is also the top of my list. We can’t really review options until we have all the current info.

Thanks for your prays
Roger

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

Yesterday I had an office visit with the MD for a Second opinion. It is confirmed that I have multiple myeloma, possible “POEMS Syndrome”. Very Rare!

Lots of blood tested yesterday, Bone marrow test on Friday and a pet scan Monday. The Scan well takes about two hours. Another morning of very deep meditation, it’s the only way I have done long hours of test over the past 8 years.

I have mixed feelings about what is good and bad information. I have known that I had multiple myeloma since the beginning. My wife really wanted to believe it was a single plasmacytoma in 2002 and I was in remission till last year. Now two more spots on my hip with the last MRI. Is naming it “POEMS Syndrome” helpful? They can call it anything they want as long as that name will give them information.

Once all the info is in then we can look at ways to treat the problem. Pain management is the first step or now to reduce the pain level. Quality of live is also the top of my list. We can’t really review options until we have all the current info.

Thanks for your prays
Roger

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

Yesterday I had an office visit with the MD for a Second opinion. It is confirmed that I have multiple myeloma, possible “POEMS Syndrome”. Very Rare!

Lots of blood tested yesterday, Bone marrow test on Friday and a pet scan Monday. The Scan well takes about two hours. Another morning of very deep meditation, it’s the only way I have done long hours of test over the past 8 years.

I have mixed feelings about what is good and bad information. I have known that I had multiple myeloma since the beginning. My wife really wanted to believe it was a single plasmacytoma in 2002 and I was in remission till last year. Now two more spots on my hip with the last MRI. Is naming it “POEMS Syndrome” helpful? They can call it anything they want as long as that name will give them information.

Once all the info is in then we can look at ways to treat the problem. Pain management is the first step or now to reduce the pain level. Quality of live is also the top of my list. We can’t really review options until we have all the current info.

Thanks for your prays
Roger

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

Yesterday I had an office visit with the MD for a Second opinion. It is confirmed that I have multiple myeloma, possible “POEMS Syndrome”. Very Rare!

Lots of blood tested yesterday, Bone marrow test on Friday and a pet scan Monday. The Scan well takes about two hours. Another morning of very deep meditation, it’s the only way I have done long hours of test over the past 8 years.

I have mixed feelings about what is good and bad information. I have known that I had multiple myeloma since the beginning. My wife really wanted to believe it was a single plasmacytoma in 2002 and I was in remission till last year. Now two more spots on my hip with the last MRI. Is naming it “POEMS Syndrome” helpful? They can call it anything they want as long as that name will give them information.

Once all the info is in then we can look at ways to treat the problem. Pain management is the first step or now to reduce the pain level. Quality of live is also the top of my list. We can’t really review options until we have all the current info.

Thanks for your prays
Roger

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

Yesterday I had an office visit with the MD for a Second opinion. It is confirmed that I have multiple myeloma, possible “POEMS Syndrome”. Very Rare!

Lots of blood tested yesterday, Bone marrow test on Friday and a pet scan Monday. The Scan well takes about two hours. Another morning of very deep meditation, it’s the only way I have done long hours of test over the past 8 years.

I have mixed feelings about what is good and bad information. I have known that I had multiple myeloma since the beginning. My wife really wanted to believe it was a single plasmacytoma in 2002 and I was in remission till last year. Now two more spots on my hip with the last MRI. Is naming it “POEMS Syndrome” helpful? They can call it anything they want as long as that name will give them information.

Once all the info is in then we can look at ways to treat the problem. Pain management is the first step or now to reduce the pain level. Quality of live is also the top of my list. We can’t really review options until we have all the current info.

Thanks for your prays
Roger

MrBobC's picture
MrBobC
Posts: 17
Joined: Oct 2010

Hi Rodger. I see your posting has duplicates like I do sometime. Thanks...I don't feel so bad now!

I have not heard of POEMS Syndrome, especially under the Multiple Myeloma umbrella. The progress with MM treatment has really skyrocketed over the last few years. Valcade (Bortezomib) and Dexamethasone has been a wonder combination as reviewed by many of the Cancer sites (LLS, Cancer Society, etc.) for MM. The survival rate has dramatically increased and they don't have enough data to show how long because the history only goes back 5 or 6 years. My last tests showed no signs of cancer; I go back the week of Thanksgiving for more follow up tests. That's the reason it is important to do your research before you commit to a treatment plan or facility. There are no guarantee's anywhere but I like the prognosis I was given earlier this year. Let your wife help with the research so you both feel comfortable with the decision.

I used to seldom go to the doctor, much less the hospital. I went to the hospital as a young adult to get my tonsils remove. Other than that I've never been admitted to the hospital. And them came MM almost 2 years ago! I hear you about the MRI's. I tend to take naps during my 1 to 2 hour stay! I hope I don't snore...so far they haven't said anything.

My wife and my lives became centered around cancer treatments, traveling to the hospital, and dealing with insurance and related bills. Not what we wanted to do, but was the cards we were dealt. Our faith and trust in God is the only thing that gave us comfort and the strength that we needed. Don't get me wrong, the road has been very hard and demanding on us physically, mentally, and financially.

Let me hear what you find out about POEMS Syndrome. That is a new one to me and I don't know anything about it.

Take care and let you wife know you have someone praying for both of you.

Bob

MichaelO
Posts: 1
Joined: Jan 2011

Hi Roger,

I just completed radiation for single plasmacytoma POEMS Syndrome. Did you ever get a diagnosis? How are you doing?

Best regards,
Mike

survivor_mike
Posts: 1
Joined: May 2013

I had my first plasmaceytoma in my spine in 2008 had surgery and 20 trips on radition.% yrs to the day I had a reoccurance in my nasal passage on the left side.this is also real rare and I have looked to find someone that has had a reoccuring p.ce. and not have multiple my.

Jan1122's picture
Jan1122
Posts: 2
Joined: Feb 2013

Hi rmaitral

I hope this finds you doing well. I've read thru several of your responses & it appears that you did do treatments. Did you do chemo & radiation or radiation only.  I'm interested to hear more about your history. It seems very similar to mine. your 1st tumor was around the same time frame as mine. My 1st  tumor was located in my upper femor bone , extremely close to the L hip. Eventually did fracture & had hip replacement 3.5 years ago. but anyway, I had my first round of radiation to this tumor which by the way was approx 8 cm long. I had excrutiating pain when I would go walking, which I did everyday. That is 'why' I knew I had something wrong, but I would have NEVER guessed cancer. Because my symtoms all started out very differently, I too have neuropathy, that was one of my 1st symptoms, lost all nerve sensations in both lower legs & both feet. even though the tumor was only located on the left side of my body. I did relatively well, went thru 2 yrs of chemo for CLL , Leukemia  & I am now doing very well w/ that. Then I had my 2nd tumor in May of 2012, it was located in my T3 in my upper spine. once again did 4 or 5 weeks of radiation. My 1st tumor they did 6 weeks of aggressive treatments.  They have given me more bone marrow test than I can remember, but fortunately for me, they have not yet been able to diagnose MM.  I hear it is different for you. Is that the case ? 

Can you update me on your status & a little bit of what you have been thru, we seem so similar & I've not met or spoken with anyone that had such a similarity as me. You stated in your 1st comment, that the Dr said it was very rare to have a 2nd singular plasmacytoma in a completely different location, exactly what my Dr has stated to me.  She has told me that I am at an extremely high risk for MM.  I just keep praying that it never materializes.  I am 56 & I was 45 went this all started.

I would really enjoy hearing from you. After reading your history , we have had the same tumors just mine was in my back the 2nd time & yours was in your back the 1st time & the same for the tumors in our hips. that's pretty wild

 

Take Care

janiceB

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