[CathyAnn]

Trying hard not to be a worry wart

by CathyAnn on Thu Apr 28, 2016 12:26 am

I was diagnosed with IgG lambda high risk smoldering myeloma in January. My M-spike was 1.3 g/dL (13 g/L) at diagnosis. The one thing that put me in the high risk group was my free light chain (FLC) ratio of 0.11.

I enrolled in the Revlimid (lenalidomide) vs. observation clinical trial (I'm in the observation arm). My numbers were rechecked prior to randomization and my M-spike was 1.1 g/dL. At the first follow up, it was 1.2 g/dL.

Because of the constraints of the study, I have to have the blood drawn within 24 hours of the doctor visit, so I don't have most of the results until after the visit (the SPEP takes about a week).

About 10 days before my last visit, I started having some left foot pain which seemed like a pretty common ailment called plantar fasciitis. I told my hematologist about it and that I was thinking of seeing a podiatrist. He didn't seem too concerned.

A week after my visit, I got my SPEP back and my M-spike was 1.5 g/dL. I have made a podiatry appointment but it's not for several weeks, and my foot is slowly getting worse, though still not terrible. I know that:

• My M-spike is going to bounce around and that doesn't usually mean much (in the study it has to go up more than 25% from baseline two visits in a row before they consider it significant).
• My cytogenetics are standard risk (IgH translocation and nothing else)
• I just had the full skeletal survey plain x-rays and the MRI of the spine & pelvis 3 months ago and they were fine
• Bone lesions are way more common in the spine & pelvis than the extremities
• My foot symptoms are almost classic for plantar fasciitis.

I was not one to run to the doctor for every little thing (partly because I AM a doctor). I don't want to approach every new ache and pain like it's an emergency. But it's for me hard not to over­react, at least this early in the game. I'm still getting used to the idea that I even have this diagnosis. I'm sure the podiatrist will get an x-ray and it will be fine. But I don't like to see a future full of repeating this worry cycle every time I have some new symptom that I probably wouldn't have paid much attention to before.

I'm sure this is a common reaction early on, but do people get past it? How?

I feel like I'm seeing everything through a new pair of glasses called myeloma, and they distort everything I see in one way or another. Unfortunately, I can't take them off.

[lrankin]

Re: Trying hard not to be a worry wart

by lrankin on Thu Apr 28, 2016 11:49 am

Having a diagnosis like myeloma makes you see everything differently. It is totally natural to be "flinchy". My husband is the patient and I am the caregiver. I worry more than he does.

You are taking the right steps. I am new to myeloma (since May 2015). My husband does have a lot of bone involvement. But I would be surprised if your foot issue was because of myeloma. There are others here more experienced, and I hope they comment.

[CathyAnn]

Re: Trying hard not to be a worry wart

by CathyAnn on Thu Apr 28, 2016 12:29 pm

Thanks for the reassurance, lrankin. I would be surprised if it's related, but that doesn't keep the idea from popping into my head every time it starts hurting more.

As an added complication, my 92 year old father-in-law was recently hospitalized and may not live much longer. He lives in Denmark, so there's a chance we may have to pick up and go over there.

I think I'm just going to ask my hematologist to order an x-ray so we can settle it and then I won't have it hanging over my head if we have to go away.

[DianeM]

Re: Trying hard not to be a worry wart

by DianeM on Thu Apr 28, 2016 2:39 pm

Hi CathyAnne!

I can understand exactly what you are going through. Last summer my left foot started hurting and I assumed the worse. I was relieved when the podiatrist did an x-ray that showed plantar fascitis. All pain went away after taking a miracle drug (prednisone) for 5 days. I have not had any pain since then.

I've had MGUS for over 4.5 years and like you mine is also IgG. My spike fluctuates too - it started out at 1 and within a couple of months it was 1.5. Now, the spike is 0.8.

I don't know how you get past the worry. Good luck with the foot - Diane

[CathyAnn]

Re: Trying hard not to be a worry wart

by CathyAnn on Fri Apr 29, 2016 3:21 pm

Got my x-ray and of course it was fine. My foot is still bothering me a lot, but I'll be seeing the podiatrist soon and in the meantime I won't be worried. Whew!

[Smittie]

Re: Trying hard not to be a worry wart

by Smittie on Sat Apr 30, 2016 12:23 pm

I have been smoldering since 2014. I can relate to the worry, it's definitely an active decision not to be consumed with it when a new ache and pain presents itself. I just went thru it with severe shoulder pain.....was never so happy to hear I have "frozen shoulder" probably due cause I am getting older. I don't want to go running to doctors all the time either, but knowing what is really going on is so much better than what I imagine in my head. Hope you get some relief from your foot pain.

[MG1]

Re: Trying hard not to be a worry wart

by MG1 on Tue May 03, 2016 3:23 pm

Hi CathyAnn,

I was diagnosed with smoldering myeloma in January 2015. To be honest, it took me a long time to get my head around it and reach a degree of acceptance. I work in a startup environment and I've long accepted uncertainty in my professional career. The uncertainty entering my personal life and the initial feeling of helplessness was very tough.

My M-spike, although low, has swung by over 40% from its lowest to highest. I receive IVIG once a month and get my bloods taken then. I get a chest infection every 2-3 months but I can deal with that. I feel aches and pains but try to ignore them. It's become my new normal.

Specifically what has helped me deal with it has been:

• Time passing
• Meditation
• Exercise
• Prioritizing regular sleep
• Education
• Family support

Smoldering is strange but now I'm thankful I'm at this stage and not the next. It took me a long time to realize that and accept the uncertainty.

Good luck with the podiatrist.

MG1

[CathyAnn]

Re: Trying hard not to be a worry wart

by CathyAnn on Thu May 05, 2016 12:10 pm

Thanks everyone for the helpful and reassuring responses. Being a physician myself (but in a completely unrelated specialty) is kind of a double-edged sword. I can understand the scientific information, but I also scrutinize every little detail on my results and every little symptom I have. I'm sure the drama will lessen with time. I do meditate but not consistently. I'm not where I should be with sleep or exercise but I'm working on it.

We are flying to Denmark tomorrow; my father-in-law is still alive but not for long. He has had a good life and we are OK with whatever happens. At least now when my foot is hurting while we're tromping through the airports, I won't be worrying that it's anything ominous. I can just be annoyed and whiny like I normally would.