[Ellen Harris]

Introduction

by Ellen Harris on Fri Jul 18, 2014 12:23 pm

Hello All!

I have been following The Beacon for a couple of months now, since my diagnosis in
April of this year. It's a great source of information and support, and I have enjoyed "meeting" all of you. I knew a little bit about multiple myeloma because my Father had it in the late 60's. He lived for three years, which at the time, made him a "miracle" patient, but ultimately lost the battle at age 50 in 1969. I was 14. What a great man he was. I think about him all of the time, especially now. I wish he would have had access to the novel agents we do. He would have been a model patient.

My story is very similar to many of yours; after suffering with varying intensities of rib pain, going to an orthopedist who diagnosed costochondritis, then bursitis, then physical therapy, (which actually helped somewhat), I was ultimately diagnosed with multiple myeloma after insisting my primary run blood and urine tests. She, of course, thought everything would be negative. I was hoping it would be too, but knew that it probably wouldn't....all the signs were there....slight anemia, persistent rib pain, and you should pardon my graphic description....very frothy urine.

I am lucky to live in NYC. So many good doctors and hospitals available. I am currently being treated with VRD,by a general oncologist who I like very much. I have finished 4 cycles, and my light chains, which were 12,000 (yikes!) at diagnosis came down quickly. Most of my bone pain resolved, too, although I still have some achiness. Not sure if it is from side effects, or due to myeloma. One of the problems I have with my dr. is that he doesn't feel I "need" a CT/MRI/Pet Scan, and we keep going back and forth with this. My skeletal survey revealed lytic lesions in my skull and some scalloping in one of the humerous bones. I was shocked they didn't see anything in my ribs, since that is where my pain was located, but I guess that is common.

His reasoning against further testing is that it will not change my treatment plan and he doesn't want to expose me to more radiation than I need; however, I think it would be good to have a baseline reading for when things may change later on, and also to see exactly what condition my bones are in. I do have osteoperosis. I am 59, and had it before multiple myeloma. I also have some minimal kidney damage, (creatinine, 1.3 -- 1.4, down from 1.69 at diagnosis), from those high light chain levels.

I am a Mother and Wife. My kids are 23 and 21, both in college, living at home. I work as a recruiter on Long Island, and I have been able to continue working because I can make my own schedule. Not sure if I could keep up with a 9 - 5 schedule if I had to. So, I am very lucky in that way.

I have tolerated the VRD pretty well, however, I do have the constipation issue, which I have not really been able to resolve adequately. Recently, I have begun working out again, and feel pretty good at the moment. I am headed for stem cell in early September.

Wishing everyone success with their treatment plans. My goal is to live long enough for the cure.....I hope it's sooner rather than later!

[nomm]

Re: Introduction

by nomm on Fri Jul 18, 2014 1:13 pm

Hi Eleen.

Sorry for asking. Do you have other family members who are affected by this cancer?

[Ellen Harris]

Re: Introduction

by Ellen Harris on Fri Jul 18, 2014 1:24 pm

As far as I know, my Dad was the only one in the family. We always thought it was somehow related to his having had malaria when he was stationed in Australia during WWII. Or, being possibly exposed to DDT during that time, as they used to spray DDT to deter mosquitoes in the field. Of course, at that time, they did not know DDT was carcinogenic. We will never really know, but evidently, something was passed on to me. I believe that there was a genetic mutation at some point. My FISH showed abnormalities on chromosome 1.

[nomm]

Re: Introduction

by nomm on Fri Jul 18, 2014 1:32 pm

Thank you for answering. God will help you to be over with worth and see only best.

As far as I know change in chromosome 1 is not inherited but acquired .

[Nancy Shamanna]

Re: Introduction

by Nancy Shamanna on Fri Jul 18, 2014 1:36 pm

Hi Ellen, thanks for introducing yourself. I am sorry that you are suffering from multiple myeloma, but hopefully can find some information and support here on the Beacon.
I did not see you mention if you are taking bisphosphonate treatments for bone building? Those did help me a lot, and I also started out from my dx with a lot of bone damage.
Hoping all the best for you...I live in Canada, and we don't have quite the same health care system as you do. Good that you can work from home since that really does give flexibility to one's work schedule!

[Mister Dana]

Re: Introduction

by Mister Dana on Fri Jul 18, 2014 1:42 pm

I can see why you would want a PET scan, especially at the beginning. Renegade plasma cells can start troubles outside the skeleton.

[NStewart]

Re: Introduction

by NStewart on Fri Jul 18, 2014 1:46 pm

Elllen-
I think that you have some very valid reasons for wanting more in depth imaging than skeletal surveys. What stood out to me in your description of the lesions that have been identified is the scalloping on one of your humeri. Having had a pathologic fracture there 5 years ago, if you can avoid this possibility occurring you should. The other Nancy also raises an important issue when lesions are present, the addition of bisphosphonates to your treatment regimen - Zometa or Aredia - to strengthen your bones.

You mention that you will be having a stem cell transplant in September. Have you been seen by a Myeloma specialist in preparation for that? If you haven't, I would suggest that you do so and also ask about more in depth imaging. It sounds like your local oncologist is doing well by you, but having a specialist in your corner, also, is important. There are several in Manhattan who would be good choices.

Nancy in Phila

[Ellen Harris]

Re: Introduction

by Ellen Harris on Fri Jul 18, 2014 2:02 pm

Thank you, all!

I did not know that abnormalities on chromosome 1 was acquired, not hereditary. Would love to know where I can see more info on that. If you can post a link, I would appreciate it.

I am receiving Prolia for the osteoperosis. I neglected to mention that.

On Tuesday, I have an appointment with the Director of the Myeloma Service at Weil Cornell hospital in NYC. I hope I like him. I have also gone to see Dr. Jagganauth at Mt. Sinai, but he was fairly beastly to me. I will not go back. I know he is a great doctor, but showed little compassion and was condescending. I will ask the Doctor at Weil to write the script for the CT/MRI. I am sure he will agree that it needs to be done.

[Toni]

Re: Introduction

by Toni on Fri Jul 18, 2014 2:09 pm

Thank you for introducing yourself, although I am sorry that we all meet each other under these conditions.

Myeloma is such a difficult disease to understand (at least I think so) and the treatments are complicated too.

That said, I strongly encourage you as the previous posters have, to get bisphosphonates as part of your treatment. If I can find the references for that I will try to post, but it helps greatly in strengthening your bones and can help prevent bad fractures which are debilitating and extremely painful.

Also, it is highly prudent to have the additional imaging tests at least as a baseline. Push for it. You obviously know it's needed.

You are indeed fortunate to live in NYC so you can access some phenomenal medical experts.

I only have MGUS (I have an M-spike) but I need to get at BMB to confirm. I have osteopenia too and I'm premenopausal at 51 so it would be prudent to have the test. My oncologist also thinks this test is unnecessary because it would not change the medical approach, but others here have encouraged me to have it done because truly, MGUS cannot be confirmed without the test.

I would be wary of a physician who advises not to do additional testing because it wouldn't change treatment approach. As we are all aware, this disease can change quickly so vigilance is prudent.

All the best! Keep staying the course

[Toni]

Re: Introduction

by Toni on Fri Jul 18, 2014 2:11 pm

Ooops! It looks like you posted just when I was writing!

So glad to see the osteoporosis is being addressed and you are seeking professionals who are specialists in myeloma.