Does anyone else here have a plasmacytoma too

[breezy_91766]

I was diagnosed with CLL 4/2010. right now 2/2014 my White count is only at 40 and the rest of my blood levels are all good. In 1/2011 the doctor thought i had pnuemonia it ended up being a "green fracture" on my right 6th rib . after a few weeks the pain stopped . then in 1/2014 The same spot was hurting again . My hemotologist told me your not sick your white is only 40 your healthy your blood is good. My MD requested a second opinon for me. I had a CT Biopsy. and this indicated i have Plasmacytoma. WOW I now have 2 seperate cancers.

[MsLockYourPosts Passed Volunteer]

I had to look that one up, as I had never heard of it. It is not uncommon for CLLers to have secondary cancers. I have dealt with breast cancer and a skin cancer, both found very early. You are lucky to have an MD who questions things. What is the suggested treatment?

Pat

[breezy_91766 in reply to MsLockYourPosts]

Thank you for your reply. Yes I am blessed to have an MD who cares. I did have to remind everyone that my CLL does not exempt me from other conditions and other cancers, and I strongly encourage others (Do not be passive if you feel something else is going on in your body it probably is) if I would have accepted my 1st hematologists lack of concern I truly feel my longevity would have been compromised.

///////////////the suggested treatment for the Plasmacytoma is 25 sessions of spot radiation. 5 days a week for 5 weeks . 45000 gy is the dose of radiation per session, if I paid attention correctly.

The treatments will probably start in March. and the radiation is aggressive because the Plasmacytoma is suppose to be curative as apposed to palliative. (I'm still learning terminologies)

I have a (solitary Plasmacytoma) because at this time I only have the one (tumor?legion) if I had more than one (tumor/lesion) My diagnosis would be Multiple Myeloma. My bone marrow biopsy 4 years ago was fine. They did another bone marrow biopsy in January and mine was at 3%. (like I said I'm still getting use to terminology) From what I understand if/when my bone marrow gets to 10% that too would be Multiple Myeloma.

[Cllcanada Top Poster CURE Hero]

I have CLL and Diffuse large B cell lymphoma... aka a Richter's transformation...

Some secondary cancers are CLL related and others aren't related, however we are far more likely to have second cancers, particularly skin cancers... than the normal age matched population...

Ultimately our immune systems are compromised, so the cancer police are in the coffee shop not on the street patrolling...

[breezy_91766 in reply to Cllcanada]

Yes I have been told our immune systems are compromised. I try to stay away from "sick" contagious people <<-- not easy to do. lol. I feel my immune system is pretty strong despite what's going on in my blood. Thank God !! I Do not get the colds & flus that my household and work place spread around and pass back and forth to each other. I feel I might be a carrier of theses virus's but don't keep them for myself.

smiles and laughs Jan

[Cllcanada Top Poster CURE Hero]

Probably a total dose of 45000 gray... I had radiotherapy on my lower spine for diffuse large B cell lymphoma in the L2 vertebrae... my dose was 30,000 gray over 10 fractions or treatments...

The hardest part is going to the clinic on a daily basis, for 20 seconds of 'zapping' ...

This might help explain some of the jargon...

myelomabeacon.com/news/2012...

[MsLockYourPosts Passed Volunteer]

Chris is so right about the daily trips for radiation being wearing! I did 28 days for my breast cancer. I was fortunate to have no issues with the radiation itself, but did find that there were days when I really struggled with the grind. Then one day they were scheduling my final appointment. In the middle of things I never thought that day would come. I hope you can get on with things sooner, rather than later, and put this episode behind you.

[Cllcanada Top Poster CURE Hero in reply to MsLockYourPosts]

The travel IS the worst part! It does loose its thrill after a few times. I was so fortunate to have door to door service provided by the Canadian Cancer Society and the Freemason volunteer driver program, without them I couldn't have done it...

freemasonry.bcy.ca/textfile...

Check for similar services in your location. At the very minimum you will need a driver. Radiotherapy is pretty easy, but I found I was totally drained and in a bit of a fog afterwards... sometimes quite nauseous... there is no way, I could or should have been driving...

Something to plan for..

[breezy_91766 in reply to Cllcanada]

I have an extremely busy schedule. I am trying to orchestrate these 25 sessions lol. I work in Orange county and live in Ontario cal. If you know the California freeways getting to and from work is a adventure/ chore all on its own. I work 7-4 m-f . I also work doing the books for my fiancés business most evenings. I was told that I should still be able to work during this. The side effects should be minimal extra fatigue and skin irritation or rash a the zap spot.. My employer is going to be cooperative with my situation so I'm praying that I can work from 7-3 and then drive an hour & a1/2 to make it to Kaiser by 4:30pm. This will work as long as Kaiser has the 4:30spot available.. fingers crossed

[breezy_91766 in reply to MsLockYourPosts]

Yes definitely I want this treatment/episode behind me. :). I also hope that future treatments will be few & far between to none.

smiles and laughs jan