Day -3 – Stem Cell Collection

Three more days to go until the big chemo day. With some help I finally have gotten my apartment organized so that I have a comfortable place to come home to after my big chemo days. Now I just need to go get some vitamin E capsules. I read that they help prevent mouth sores. The chemo kills any fast growing cells. This not only kills cancer cell; but also causes problems with the lining of the mouth, hair, and probably a few other things that I don’t know about. I’ve read that mouth sores can be so bad that it is impossible to eat. But, I’ve heard that vitamin E can prevent them. I’ll let you know if that theory holds out.

I’ve posted a few links on the right hand side of the page that explain a bit about what Multiple Myeloma is, and about the transplant process (its kind of technical, but parts of it are still understandable by a normal person).

The mini-allo transplant is one of the best ways to get a long-term remission. But, there is no cure for Multiple Myeloma. So, when they say “success” they actually mean a remission. Sometimes people have been known to get a three year remission with a transplant. That would be great. I would love to have three years of “normal” life again. To me that would mean being able to work a regular job and a 40 hour week. And being able to ride my bicycle around Lake Union four times (20 miles) with no problem. And going skiing or ice skating, or even sailing around Lake Union. There is a 50-60% chance of “success” with a transplant. Not the best odds but, I’ll take what I can get.

Introduction

My name is Dennis. I am 52 years old. I was diagnosed with Multiple Myeloma, a cancer that involves the bone marrow, on October 13th, 2004. I have tried two treatments (dexamethasone/thalidomide and Velcade) so far, and there has been no response to either. Since there has been no response to these initial treatments, I am eligible (or more like, the only alternative left) is a stem cell transplant.

I will be starting the first part of a mini-allogeneic bone-marrow stem cell transplant (mini-allo for short) in less then a week. They call it a mini because the procedure uses less chemotherapy drugs the a standard transplant. However, a mini-allo is actually two transplants. The first transplant will involve collecting and transplanting my own bone-marrow stem cells. Then the second transplant will use stem cells from a doner.

The details of the actual process will be posted to this website as I go through each phase.

Schedule change

Over many years I donated over 4 gallons of blood, stopping when the first hints of an immune problem appeared. Donating just seemed like a good thing to do, and I never expected to need any blood transfusions myself. But I have needed 6 units so far, and might need more, possibly during this transplant procedure. Now, I need stem cells from a donor. Of course I’m very thankful for the many

DAY 46

HI EVERYONE,
WELL HERE I AM AT DAY 46 –THINGS ARE GETTING BETTER AND BETTER –I CAN DRIVE AND DO ALOT THINGS LIKE I DID BEFORE BUT I DON’T THINK MY BODY HAS FULLY RECOVERED. THE DOCTOR SAYS IN 3 MONTHS I SHOULD HAVE 75 OR 80% PERCENT OF MY STRENGTH BACK. THAT IS MUST OF MY PROBLEM NOW EXCEPT FOR STILL SOME LINGERING EFFECTS OF MY ESOPHAGUS–I SEEM TO STILL GET ALOT OF HEARTBURN AND KINDA OF A TIGHTNESS THAT HURTS MY BACK AND SUCH BUT I GUESS THAT IS STILL SOME EFFECTS OF THE CHEMO. I HAVE TO BE CAREFUL NOT TO EAT TO MUCH OR NOT TO EAT SPICY FOODS AND CAFFEINE. I CAN HAVE SOME CAFFEINE BUT NOT A LOT. BUT I DO NOT NEED NAUSEA PILLS ANYMORE. ITS KINDA HARD TO EXERCISE BECAUSE IT IS STILL COOL OR COLD OUTSIDE SO I DO WHAT I CAN INSIDE THE HOUSE BUT THAT IS KINDA LIMITED SO
OVER ALL I AM SLOWLY BUT SURELY GETTING BETTER. AND MY HUSBAND DID BUY ME THAT WATCH FROM NEIMAN MARCUS SO I AM HAPPILY SPORTING MY NEW WATCH AS I WALK AROUND MY HOUSE. IT’S A GETTING BETTER AND VALENTINE’S GIFT IN ONE. I SURE DO LOVE IT. WELL THATS IT FOR NOW. WILL KEEP YOU POSTED INA FEW DAYS. SUSAN

Day 40

Hi everyone,
Well i am doing alot better. I still do not have all of my strength back but i can do alot more very slowly–of course i do take a nap and sit down if i feel tierd but over all i continue to get better. Each day is a new challenge. Henk i hope you are doing okay what did your oncologist have to say? I find that my head is extremely sensitive to the cold air or just in general i can’t wait to get my hair back. But my appetite has fully come back and Don i quess that man you talked to is right your appetite is back before the energy level but i have not gained to much weight. i try to do alittle something every day even if it’s just a little house work. i don’t feel back to normal but this is much better then before i can eat and enjoy my food and not throw it up and i am adjusting to the smells its getting better not every thing makes me sick now. i can tolerate the smell of my dog and such when i couldn’t before every thing made me sick. So for now i just rest and i go to see my regular oncologist on Feb 23 to see how my blood counts are and such. will keep you posted.
Susan

DAY 35

HI EVERYONE,
WELL I CONTINUE TO GET STRONGER EVERY DAY. I AM NOT HAVING TO TAKE MY NAUSEA PILLS IN THE MORNING AND I AM GETTING BY –HOWEVER I DO STILL GET SOME STOMACH DISCOMFORT AND I HAVE HEARTBURN WITH JUST ABOUT EVERYTHING I EAT AND THE BURPS BUT OTHER THEN THAT I AM DOING FAIRLY WELL. I DROVE FOR THE FIRST TIME YESTERDAY JUST A SHORT TIME TO MY SISTERS HOUSE AND BACK. I AM STILL JUST ABOUT I’D SAY 55% ENERGY WISE BUT HOPEFULLY WITH TIME THAT WILL GET BETTER ALSO.THANK YOU ALL FOR YOUR COMMENTS AND WELL WISHES I WILL CONTINUE TO POST. SUSAN

DAY 32 AND A VISIT TO TRANSPLANT DOCTOR

HI EVERYONE,
TODAY I WENT TO SEE MY TRANSPLANT DOCTOR AND HE SAYS I WON’T SEE HIM UNTILL DAY IOO BUT HE DID GIVE ME TWO NEW PRESCRIPTIONS- ONE IS ACYLOVIR FOR SHINGLES SINCE I HAVE HAD THEM BEFORE AND BACTRIM FOR ANY THING LIKE PNEUMONIA OR ANY THING LIKE THAT. HE SAYS I WILL TAKE THE BACTRIM 3 TIMES A WEEK FOR MAYBE 6 MONTHS AND HE SAYS IT IS USUALLY WELL TOLERATED BUT IF IT BOTHERS ME WE WILL HAVE TO STOP AS I AM SENSITIVE TO EVERY THING. AS FAR AS FEELING BETTER –YES SOME WHAT I STILL GET WEAK AND TIRED BUT I AM BETTER THAN I WAS. I HAVE MY UPS AND DOWNS. I AM A LITTLE AFRAID TO LET GO OF THE ANZEMET PILLS FOR NAUSEA BECAUSE I WANT TO BE ABLE TO EAT. BUT I MAY
TRY TOMORROW AND NOT TAKE ONE AND SEE WHAT HAPPENS.
MY WEIGHT ACTUALLY HAS GONE DOWN I LOST ABOUT 15 POUNDS. I STILL HAVE A FEW TASTE BUDS PROBLEMS LIKE A COKE STILL DOES NOT TASTE RIGHT TO ME BUT OTHER THINGS DO. BUT I LONG FOR A BIG TALL COKE –ITS JUST NOT HAPPENING YET AND I SEEM TO GET HEARTBURN ALOT. SWEETS DON’T TASTE RIGHT EITHER. BUT I AM EATING THE ALL IMPORTANT FACTOR. I WOULD SAY ENERGY WISE I AM STILL 50 PERCENT. BUT I CAN TELL YOU IT DOES GET BETTER AND I HAVE MET ALOT OF PEOPLE THAT HAVE HAD TRANSPLANTS AUTO AND ALLEOGENIC. IT SEEMS LIKE WE DON’T GET OUR HAIR BACK FOR MAYBE 4 MONTHS. SO MAYBE I WILL HAVE MY SCALP COVERED BY APRIL. IT GETS REALLY COLD WITHOUT HAIR. I HAVE TO WEAR MY BEANIES TO BED EVEN. BUT EACH DAY GETS BETTER. UNTILL NEXT POST. SUSAN

FEELING BETTER

WELL HERE I AM ON DAY 29 AND I CAN ACTUALLY SAY I FEEL BETTER –OF COURSE I AM STILL TAKING MY DAILY ANZEMET PILL FOR NAUSEA AND I AM STILL SOMEWHAT WEAK BUT I AM BETTER!!! I WENT TO THE GROCERY STORE FOR THE FIRST TIME IN A MONTH TODAY. I AM EATING PRETTY WELL AND FEELING LIKE I AM JUST GONNA GET BETTER AND BETTER. I SAW MY REGULAR ONCOLOGIST YESTERDAY AND HE SEEMS PLEASED ON HOW I AM DOING MY BLOOD COUNTS ARE A BIT DOWN BUT HE SAYS THEY WILL FLUCTUATE FOR A WHILE. HE ASKED IF I WANTED PROCRIT BUT I DECLINED FOR NOW I WANT TO SEE IF I CAN GET BETTER ON MY OWN HOWEVER HES SAYS THEY ARE THERE FOR ME IF I NEED THEM. Monday WILL BE A FULL MONTH SINCE I HAD MY TRANSPLANT. I DON’T KNOW ABOUT TANDEM TRANSPLANT RIGHT NOW. I JUST WANT TO GET BETTER AND BETTER AND THEN MAYBE BUT I AM THINKING NOT MAYBE SOME MAINTENANCE PILLS LIKE REVLIMID. MY DOC SAYS WE’LL TALK ABOUT IT AT 100 DAYS AND AFTER ANOTHER BONE MARROW BIOPSY. BUT FOR NOW FOLKS I THINK I AM GETTING BETTER.

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