Beth Morgan Multiple Myeloma Treatment Blog
My life as a myeloma patient for almost two decades
This doesn’t have anything to do with MM, most likely. I can’t remember having an insect bite or walking into any unusual foliage. It’s been at least 3 weeks since my last chemo, so I don’t think it can be a reaction to that. I’ve had shingles a couple of times, so I’m familiar with how that would look and know it’s not that. This rash itches, but not so much that I have to claw at it. I can pretty much ignore it. It’s about 3 inches above my ankle on my left leg. What is it?
It’s been a while since I posted anything. Time gets away from me.
I have an appointment at Duke on August 2nd. I’ll start all the tests that need to be done prior to SCT, such as bone marrow biopsy (joy), EKG, blood tests and more.
I’m typing this from my new MacBook! I got this so I can do podcasts and videos.
More soon!
This came to me by email. It looks interesting. I have XM Radio, so will try to remember to listen.
VITAL OPTIONS?? INTERNATIONAL
TeleSupport?? Cancer Network
This Sunday on The Group Room?? cancer talk radio show
Sunday, July 15, 2007
1???3pm PT ?? 4 ??? 6pm ET
Multiple Myeloma
Nearly 20,000 people will be diagnosed with this cancer of the plasma cells (I think they meant to put “each year” here). This is often a painful disease and while not curable it is treatable, so if you or someone you care about is dealing with Multiple Myeloma, then there are clinical advances you need to know about. Join us in The Group Room as we partner with the International Myeloma Foundation to talk about the issues that impact patients and their loved ones with host, Selma Schimmel, CEO & Founder of Vital Options International and special guests:
Dr. Brian Durie
Senior Advisor, Hematologic Malignancies, National Director, Multiple Myeloma, Aptium Oncology, Inc., Attending Physician, Cedars-Sinai Medical Center and Outpatient Cancer Center at the Samuel Oschin Comprehensive Cancer Institute, Los Angeles, CA; Chairman, International Myeloma Foundation
Susie Novis
President, International Myeloma Foundation
Call in and participate!
1-800-GRP-ROOM ?? (1-800-477-7666)
or e-mail us at info@vitaloptions.org
For a listing of stations in your area or to listen to the live Internet Simulcast visit www.vitaloptions.org. The Group Room can be heard live via XM Satellite Radio on TalkRadio Channel 165. Download podcasts of The Group Room at iTunes and iRadioNow!
The Group Room is produced by VITAL OPTIONS INTERNATIONAL, a non-profit cancer communications, support and advocacy organization, in association with Premiere Radio Networks.
Vital Options International
4419 Coldwater Canyon Ave., Suite I ?? Studio City, CA 91604-1479
Tel: 818-508-5657 ?? Fax: 818-788-5260 ?? Toll-Free: 800-477-7666 ?? www.vitaloptions.org
When I got home from having Doxil and Velcade yesterday, I could hardly stay awake. I have benedryl in my IV to try to keep me from getting those hives from the Velcade. They’re not completely eliminated, but much less severe with the benedryl and dexamethasone. However, it makes me very sleepy! It’s amazing that when I have IV benedryl, it has this effect on me. When I take a pill, I hardly feel it at all. I can feel the benedryl move up the veins in my arm when it’s pushed. It burns. Then I feel like I’m drunk. When I get home, all I want to do is sleep. So, that’s what I do. It’s not as though I have a choice.
Today I got up early. I bought some sod for the back yard, and someone came to lay it down, but his helper left at lunch time. After lunch, I looked out the window and saw him and his mamacita working out there, so I decided to go help them. Boy, is that back breaking work! I had done another part of the yard a few months ago, which is why I decided to hire someone to do it this time. Thank goodness it started to rain. We all got to quit then.
Anyway, after working hard today and having chemo yesterday, I’m beat. It will be an early night for me.
Tomorrow is my last Velcade & Doxil before SCT. I’ll have two more doses of Velcade alone next week. After that, I’ll just have tests (MUGA, BMB, EKG, etc).
I’m glad to be nearly done with the Velcade/Doxil regimen. There’s some painful neuropathy developing in my legs and feet. I don’t think I could do much more. Someone once told me they’d be surprised if I got through 8 cycles of Velcade. I did, but I missed a few doses for various reasons. I know what she meant though. It’s better than steroids, but I’m all rashy, I’m hurting from the neuropathy and the skin is peeling off my hands.
I don’t think I can stay awake any longer. More tomorrow!
The people at Duke were wonderful. I saw nurses, 2 doctors, a social worker and someone who went over all the insurance information with me. My blood was drawn and I was scheduled for a return visit after I complete one more cycle of Velcade and Doxil, which I started Tuesday.
Dr. Long says that I should start the process at the end of August and be finished by the end of September. They will collect more stem cells for the transplant and let the cells stay on ice at Wake Forest as a backup for later on. I won’t have to have more chemo for mobilization. We’ll use 2 types of injections for a week beforehand, then I’ll have a catheter surgically implanted for the collection and chemo/transplant a week later. There are no specific dates yet. I need to have all the usual tests to make sure I can safely get through it, which I’m sure is no problem.
My sister, Rachel, will be coming to Durham to help me through this for a couple of weeks. That’s a huge deal, because it means being away from family and running all the errands. I’ll need to be taken to the clinic each day to have drugs and transfusions as needed.
Since the procedure is outpatient, I am looking for a Reiki Master and someone to help with visualization during this time to help me get through it and possibly recover more quickly. I’m hoping they’ll be able to come to the apartment and I won’t have to go out for this.
I’m hoping that J will be able to do hers about the same time, so we can get through it together. I don’t know if many friends schedule theirs for the same time, so this might be a novelty.
Someone from Duke called me late Friday to tell me that Dr. Long, of the Adult Bone Marrow and Stem Cell Transplant (ABMT) Program, could see me Monday morning. That was fast. There are three questions I have for him.
I’m sure I’ll think of others before I get there.
This is what Doxil does to my hands. They recover some during my time off. Sometimes there’s bleeding, and it usually hurts (but just when I bend my fingers). Someone recommended that I try New Skin Liquid Bandage, which I have. I must say, it’s smelly! Plus, when I paint it on, it stings.
In addition to the HFS (hand-foot syndrome), I also have some stomatitis. It’s not too bad, and doesn’t last very long (4 days per cycle, maybe). However, a few days ago, my tongue was actually bleeding. On the worst days, I sort of want to just keep on eating ice cream at a steady rate. I tried toast for breakfast one day, and it felt like I was chewing on razor blades. That’s an exaggeration, yes.
Here’s a link to the Doxil site’s list of possible side effects for your reading enjoyment.
No matter what this stuff does to me, it’s still better than dex!