Category: Cancer

This just in

This came to me by email. It looks interesting. I have XM Radio, so will try to remember to listen.

TeleSupport Cancer Network

This Sunday on The Group Room cancer talk radio show

Sunday, July 15, 2007
13pm PT Ģ 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 Ģ (1-800-477-7666)
or e-mail us at

For a listing of stations in your area or to listen to the live Internet Simulcast visit 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 Ģ Studio City, CA 91604-1479
Tel: 818-508-5657 Ģ Fax: 818-788-5260 Ģ Toll-Free: 800-477-7666 Ģ

Sleep is good

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!

My Duke Visit

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.

Duke tomorrow

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.

  1. Will they use stem cells that were harvested someplace else when the bone marrow plasma cells were at 30%
  2. If I have to re-harvest, do I have to have chemo again for mobilization?
  3. Do they require an outpatient procedure or is inpatient also an option?

I’m sure I’ll think of others before I get there.

Doxil side effects

skinproblem.jpgThis 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!

Stem Cell Transplant

I saw Dr. Orlowski yesterday, and his advice to me was not to put off the stem cell transplant any longer. I understand the reasons for this, but it’s difficult to overcome my fears. I planned on having the SCT when the current treatment (Velcade and Doxil) no longer worked for me, but he says I should do it this summer. I was surprisingly calm about it yesterday, but last night I had weird nightmares about SCT and today I’m extremely anxious.

UNC won’t use the stem cells I collected at WFUBMC, so my other choices (if I want to stay in NC) are to go back to WFUBMC or go to Duke. About a month ago, I emailed someone at WFUBMC and asked a few questions, but never got a response. I had some communication problems with them last year, and it was kind of off-putting. I called Duke a little while ago to see if I can get an appointment with Dr. Long.

Dr. Orlowski thought it would work out that the SCT would be scheduled for September if I got on track right away. These things take a little time to get under way.

It seems the Velcade & Doxil is still working well though. My IgA was 490 mg/dL yesterday, which is about the lowest it’s ever been. It still has a little way to go before it’s in the normal range. I’ll probably find out what my m-spike is in a day or so. I’ll just stay with this treatment until the SCT.