[terryl1Participant]

Hello, I found this site surfing the net and I really like the useful posts from everyone. I am a 49 year old guy with a wife and two young sons who was diagnosed with myeloma in August, 2011. It was found only because I am on Lipitor, a statin, for high cholesterol. My family doctor referred me to a hematologist for a low white blood count and, well, you all know the rest! I live in the state of New Jersey in the US, very close to Philadelphia, where there is a world famous cancer center at the University of Pennsylvania. The myeloma expert there told me I am smoldering with a high risk for progression to active myeloma. I have also joined a landmark study of the natural progression of myeloma from its precursor states of MGUS and smoldering myeloma which is being conducted at our national Institutes of Health near Washington, DC. The myeloma expert there, Dr. Landgren, is trying to figure out how to halt progression to active myeloma using vaccines, etc. He is an amazing man and I wouldn't be surprised if he figures it all out for all of us. Currently, I do a watch and wait protocol and they check for CRAB symptoms. So far, I have mild anemia, but not enough to trigger treatment. Anyway, I am so happy that I found your site. In the US, we have the Myeloma Beacon site and the ACOR listserv and many people from throughout the world post on them. Regards to all. Terry

[brochoParticipant]

Hi Terry welcome glad you found us. You were lucky they spotted your myeloma early before any damage was done Your doctors sound impressive and very cutting edge , you will be able to access new treatments as well This site is brilliant you wont find a more supportive group of people anywhere and its not all gloom and doom either we share laughs as well Good luck with everything Bridget

[mhnevillParticipant]

Hi Terry

Welcome from across the pond! I enjoy visiting the Myeloma Beacon site. It is interesting that there are differences between treatment regimes here and in US.

Do hope your smouldering state lasts for many years. I think that the Trial you are on will be very helpful for people who are diagnosed early.

All best wishes.

Mavis

[terryl1Participant]

Hi Bridget and Mavis, I am very impressed with the site and the incredible support you give each other. I will definitely check in often. I am lucky they caught my myeloma inadvertently before bone and kidney issues arose but I have to be monitored closely as I have light chain only kappa type which hits the kidneys hard. I am not sure about the differences in treatments between the UK and the US, but I do know there are a variety of clinical trials available near me that are cutting edge. At the University of Pennsylvaia they have started an amazing trial involving genetically altering T cells to be reinfused into the patient after a SCT. It is very similar to the approach they employed last summer in a leukemia trial which basically cured two out of three men who had exhausted all options. The fact that they are now doing it so quickly in myeloma is great news. The lead doctor at UPenn is Carl June. My doctor at UPenn told me he expects incredible results which will be "big news". Let's hope he is right.

[PerkymiteParticipant]

Hi Terry welcome (?).

We will all look forward to your posts I am sure as good old England is still using leeches I think:-D 😀 . No, seriously, your treatment does seem to be ahead of the game and no doubt it will all feed across to us at some time in the future.

Kindest regards ? Vasbyte

David

[tomParticipant]

And a warm welcome from Me Terry.

I just wanted to wish you a good journey with your MM and am sure you can keep us all up to date with new treatment .

Keep strong

Tom "Onwards and Upwards"

[BADGERParticipant]

Hello Terry and welcome
glad you found us its good to hear what goes on over the pond I read Dr James Berensons reports you seem much further ahead with treament than us
you are so lucky to have been diagnosed before much damage has been done my kidneys have been badly damaged good luck with holding of the progression of MM
Kind regards Jox

[terryl1Participant]

Thanks again for welcoming me. FYI–there is one cutting edge trial which is occurring now at our NIH and several other locations involving carfilzomib, revlimid and dex for newly diagnosed patients. Apparently, the results have been very impressive in that the side effects are very limited and many people are going into CR in one cycle, i.e. 28 days. Some people think it may revolutionize MM treatment by obviating the necessity of a SCT, i.e. the Berenson philosophy. Also, a company called Oncopep is going to start clinical trials soon using a cocktail of peptides to try to halt myeloma progression. The peptides vaccine was created at Dana Farber Cancer Institute in Boston. It sounds very promising and should be recruiting volunteers soon. I have also read quite a bit about Dr. Matsui at Johns Hopkins University. He is trying to figure out how to actually eradicate the myeloma stem cell which could lead to an actual cure as can occur in lymphomas and leukemias. I think there is a lot of hope out there for all of us. Big hug. Terry from New Jersey

[terryl1Participant]

Hi Tom, et al., I have been reading through the discussion forum and I have read many past and current posts. I find them very helpful and I note the ability to continue working for many members. That is my greatest fear, namely, that I won't be able to work and will have to go on disability or take an early retirement at such a young age. I have a wife and two young kids….well, you know the drill. The thought of that really depresses me (actually, scares the hell out of me!) as I love my work for what it is, not simply as a way to bring home the bacon, as we say. Are most people here able to work? Also, on this forum and the ones from the States, I read about the horrible side effects of dex. Isn't there a way to counteract those effect using xanax, valium, etc? Best wishes from daffodil and crocus covered Haddonfield, New Jersey….Terry.

[tomParticipant]

Hi Terry

Re work ::::: I had my diagnosise in Jan 2009 was working still, I work on an Inland Dock loading and unloading Ships/Lorry's which is hard physical work and the treatment I had was CDT.
I had 3 cycles of that and was too tired to carry on working so went on sick may 2009 I had a total of 5 cycles of CDT and my stem cell transplant In December 2009, After getting the all clear I went back to work in May 2010 ( a total of 1 year on sick) and the work they gave me is light dutie's and at the moment I am still on it.

Could I go back to my old job well the answer is a big NO I also love the job and the people I work with but also feel that the work (and it is light work) is or might be too much and I am a young 56 years of age too ear;y to retire and too skint to leave work :-S so I get up and go untill I am told "Am sorry but we have to let you go" will I be sad as and if that happens :-/ well half of me will be.

Good Luck with your treatment and hope you can work through it.

Tom "Onwards and Upwards" x

[FadiaParticipant]

Hi Terry,
Just read your post and I was very interested to hear that you have only mild anemia so treatment has not been triggered yet. I was diagnosed accidentally too, I was found to have MGUS in 2007 and was checked every 6 months until last week when I was told I had become mildly aneamic so they would start me on Chemo next week. I am still reeling from the shock and don't feel unwell at all and have been told I have no other symptoms at all so I am thinking maybe I could wait a while longer to see if my aneamia stabilises. I don't want to have to go through this treatment unless and until it is absolutely necessary. What anemia rate do you have at the moment ?

Fadia

[FadiaParticipant]

Fadia,
Oh, just read everyone's posts and I should have said a Big Hello to you all. I'm Fadia and I am due to start what sounds like awful treatment next week (might just run off to the hills instead, don't know yet )has everyone had the CTD treatment of cyclophosphamide, thalidomide and dexamethasone ?

Fadia

[terryl1Participant]

Hi Fadia, Thanks for your response. The protocol generally is not to start treatment until you have CRAB symptoms, i.e. high serum calcium, renal problems (high creatinine), anemia (10.0mg/dl or lower) or bone involvment (lesions, etc.). Some doctors also use the CRABi criteria, namely, the small "i" representing recurrent infections. If I were you, I would seek an immediate second opinion from a myeloma-only doctor and I would question your doctor as to why to start treatment now if you have not hit the CRAB criteria. What was your plasma cell infiltration in the bone marrow? Are you high risk i.e. abnormal chromosomal problems, etc. My hemoglobin is 12.0 mg/dl. That is mild anemia for a 49 year old guy. What is yours? Fadia, be your own advocate and demand a second opinion and read up as much as you can. Try the Myeloma Beacon, the MMRF and the International Myeloma Foundation. Good luck and question, question, question the doctors as to why you are not just smoldering. Good luck.

[FadiaParticipant]

Hi Terry,

Thanks for the info – I have never heard of the CRAB criteria but I have been told that the only presenting symptoms are my hemoglobin level which is 10.9 and my protein level is 39. My creatinine level is 52, calcium serum is 2.23.I have had no infections at all or bone lesions.
On Monday I am going to see a homeopathy doctor to see if they have any suggestions of how I might bring down the protein levels in my blood – it seems strange to me that I have been able to function very well since this was diagnosed in 2007 and then something has happened to make the protein start to gradually rise. Unlike you, when I was diagnosed my doctor told me it very seldom progressed so there was no point in me thinking about it unless and until it did start to progress, I can now see I should have been doing my own research on it because I've now found myself in a position where my doctor has given me a week to get my head around the idea of chemo. Since I have obviously been smouldering for almost 5 years I feel I could have prepared myself much better than I have.

Fadia

[mhnevillParticipant]

Hi Terry

Excuse me if I invade your post to reply to Fadia! Hope you are keeping well.

Hi Fadia

You seem to be in a similar position to me in being led by the nose to CDT and not being happy aboout it!! See my posting "Starting CDT." There have been very helpful replies.

I am awaitng full body xrays and a bone marrow biopsy. I will be in a better position to make my final decision then. No one can make you start treatment within a week. Tell them you want to wait to get your head round it. After all, it is your life! Keep in touch.

All best wishes.

Mavis

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