[LoriTM]

Skull lesion, blurry vision & headaches during RVD

by LoriTM on Wed Nov 15, 2017 1:05 pm

This is my first post so I would like to thank everyone in advance for any input they provide regarding my treatment question.

I was diagnosed with multiple myeloma after a pathological arm fracture in August. Just prior to this incident, I had noticed a very large mass on my skull that seemed to appear overnight. No pain or discomfort accompanied this skull mass, and once all tests were done and results were in, I was diagnosed with multiple myeloma and had begun treatment with Velcade, Revlimid, and a steroid (weekly infusions and daily Revlimid pills).

So far I am responding well to the treatment as I am in excellent health other than the multiple myeloma.

My concerning question follows:

After my myeloma treatment began, the rather large protruding mass on my skull began to "sink" in, in the center (think of a volcano, raised mass with divot in the middle). I've been in treatment since the end of August and will be entering my 4th cycle of treatment on Saturday (4 cycles are "recommended" in preparation for a stem cell transplant).

However, in spite of the good test results I have been receiving, I am very concerned with this skull lesion, as it aches and feels like it has it's own "life" (I'm hoping you can understand this reference).

Additionally, I seem to have blurry vision at times, headaches, and a little sinus sensitivity on the side of my face where the mass is.

I also understand that these symptoms can be the direct result from all of the medication and I have expressed my concern to both my oncologist and the transplant specialist, but they seem unconcerned (probably because my tests results are so good).

Of course, it's my body, so naturally I'm concerned, as I fear this has somehow gotten into my brain or the soft tissue.

Again, test results don't appear to show anything other than the original diagnosis, but I was wondering if anyone has input or perspectives they could share that might help me understand this situation better.

Thank you again for any input / encouragement / information you can provide.

Lori

[Multibilly]

Re: Skull lesion, blurry vision & headaches during RVD

by Multibilly on Wed Nov 15, 2017 6:31 pm

Hi Lori,

Welcome to the forum!

I can appreciate your angst.

When was the last time that you had a PET/CT or MRI that involved your skull? In particular, have you had one since this development?

[Nancy Shamanna]

Re: Skull lesion, blurry vision & headaches during RVD

by Nancy Shamanna on Thu Nov 16, 2017 9:17 am

Hello Lori,

As well as the advice that Multibilly has given you, I would suggest that you go to see your regular optometrist or ophthalmologist to check on the blurry vision Although this might be due to taking steroids, it is a matter of concern, and an eye care professional could advise you on that.

It sounds like you had a plasmacytoma on your skull. Unfortunately lytic lesions can also develop on the skull, and I hope that the treatments you are on are able to clear that up.

[Terrij]

Re: Skull lesion, blurry vision & headaches during RVD

by Terrij on Thu Nov 16, 2017 7:59 pm

My daughter developed a plasmacytoma next to her right eye. She had radiation along with her myeloma treatment and the plasmacytoma disappeared.

[NStewart]

Re: Skull lesion, blurry vision & headaches during RVD

by NStewart on Fri Nov 17, 2017 12:52 pm

You've gotten some really good advice. I, too, would suggest that you see an ophthalmologist for the blurry vision because this could be unrelated to the growth on your skull, but a side effect of the steroids. The development of cataracts is common with steroid use. An MRI or PET/CT of your skull certainly would seem appropriate. And, if possible, you might consider seeing another myeloma specialist for a second opinion.

All the best to you in figuring out what is going on,
Nancy in Phila