Immune therapy: the basics

There are many approaches in the confusing field of immune therapy research. This site gives an overview that may be helpful: MRF :: Immunotherapy

Chemo Haircut

The Highland Village Barber is always on call

Chemo haircut 2

Now, just make sure you get the fade right.....

Chemo 3

This may start a new fashion trend.... the mohawk combover!

Chemo 4

Let's not get carried away!

Chemo Haircut 5

The apple doesn't fall far from the tree..... Don with son Christopher (aka the "Village Barber")

Merry Christmas

Christmas turned out to be great for us as we found out on Thursday that we would be able to return home for the Christmas holiday. We got in Friday night about 2100 & will return to LR on Tuesday.

Dr. van Rhee was extremely pleased with my response to the chemo. A number of key labs showed marked improvement and he was very encouraging as always. The chemo really knocked me on my ass for 4-5 days with the main side effects being fatigue and marked alteration in taste. I was sleeping about 22-23 hours/day – kind of just existing, plus one gets a strange metallic taste in the mouth so nothing tasted good – not even water. Baked potatoes and scrambled eggs really hit the spot however. The thought of some foods made me nauseated, especially coffee if you can believe that. I am just getting to the point where I can drink it again. I have no stamina and get winded with the least activity but the doc says my RBC count should begin rising pretty fast now that they knocked down the tumor mass. My last H/H was 9.7/29.1 and slowly rising. I had a couple days where I got behind on fluids and was symptomatic with dehydration and altered electrolytes but we corrected that with some IV supplements & fluids, water and Gatorade.

After the chemo was completed I began the routine of twice daily growth factor shots along with my daily blood work and 24 hour urine collections every Monday & Thursday. The way it works is they wait until your WBC count nadirs (drops then rises) above 2,000 they do what is called a Procount to check for potential adequacy of stem cells. During this time I was managed by a nurse practitioner. I never thought I would be excited to have a WBC count of 600 and then later 23,000 but I was.
We then harvested stem cells on Thursday & Friday, a process where they hook you to a leukopheresis machine for about 4 ½ hours and spin off your stem cells. It’s a pretty simple and painless process albeit very expensive. We were told it costs about $75,000 for each hook up to the machine. I don’t expect they collect that much but thank God for insurance. They collect about 20,000,000 stem cells. Apparently only 2,000,000 are needed for transplant but they collect extra for research and also in the event that additional transplants are needed. Some patients have received up to 6 transplants.

When we return I will have another PET scan & bone marrow biopsy, see the doc and then begin the vaccination series. Not that I like bone marrow biopsies but I am curious to see the percentage of myeloma cells after the chemo. I’m going to convince myself that these bone marrow biopsies are fun. At this point the protocol gets rather complex but my sainted wife has it all in her palm pilot. We go by the days from the start of treatment. Today is day #23. We should be home about half of January and then I will get my first transplant in early February. Apparently the chemo you get to kill your bone marrow is pretty nasty so we expect to spend most of February in LR. They give the chemo (high dose Melphalan) then exactly 24 hours later do the transplant. That whole process takes 3-4 weeks depending on how well you do.

I gotta say I feel pretty good and remain optimistic. Mary Jo has really carried the burden like a champ and has been nothing short of great, but it is very hard on her also as I have been pretty dependent. I can’t even drive. We did have a mild verbal altercation the other evening when she was under the impression that I was being grumpy and critical of her driving. I really did not know why she felt that way because I never get grumpy and would not think of criticizing her driving. Nonetheless to say her suggestion was that I take an Ativan before we started the trip home so I took one & slept half the way home.

Our kids are all here so we are having a wonderful Christmas plus the dogs have their own backyard again. I will see many of you in January as this trip I still have to be pretty careful. As my dear friend David says “It’s all bueno” otherwise and hope the same for you.

Our home in Little Rock

Don & Bogie (aka "clown")
Maggie on patrol with Don









View from the front porch
Inspiring, isn't it?









Don had his central line (trifusion catheter) inserted on Friday morning followed by two hours of leukapheresis. They started started chemo that afternoon. The continuous infusion is really remarkably simple. Two oral agents (Thalidomide and Dexamethazone); the "red devil" (Adriamycin) goes over 4 days and every day we go to the cancer center for counts, nausea med and another bag of IV chemo with the other three agents. Don did fairly well on his first two days of high dose chemotherapy. A little nausea the first day, but otherwise did well. The third day it hit him like a brick wall. He slept almost 20 of 24 hrs the next three days. We had a bit of postural hypotension from dehydration, as well. Above are some pictures of our apartment and our "therapy" pooches, who have adjusted well to the new surroundings.

On the road again....

Believe it or not we have been here for a week after having a nice drive over on December 3rd.. It takes 5-6 hours depending on stops. We are staying at place about 10-12 miles from the hospital in a nice peaceful, quiet complex where many other patients stay and the drive takes about 20”. Rush hour here is nothing like in DFW! The dogs have plenty room to roam and they seem to enjoy LR.

Monday & Tuesday were testing days & they both went well. I did find out why my stamina has been so poor – my hemoglobin was < 10. The rest of the labs hadn’t changed much except the plasma cell % in my bone marrow increased from 42 to 60%in the past 2 months. The normal is about 5% so basically over 50% of my bone marrow is cancer cells.

Thursday I met with my doctor, Frits van Rhee, who is from the Netherlands and trained mostly in London & Oxford. He is one of those geeky MD, PhD guys with the soles falling off his shoes, Dr. Zorba type hair, etc. but he is very patient, cool & funny and obviously very smart. We like him a lot plus he swears so that makes him very special to me.

Everything started on Friday morning at 0800. I went to radiology and had a Trifusion catheter placed under fluoroscopy. They used to place a normal triple lumen catheter then exchange it with a Quinton for stem cell harvest and the switch back – obviously a lot of costly, painful hassles. The Trifusion is used for everything so no switching. They just started using it so I am one of the 1st patients to have it. It is a triple lumen right IJ that they tunnel under the skin and bring it out of the right upper chest wall so it kinda resembles a subclavian. I expect I’ll have it till at least after my 1st transplant.

From there I had my first leukapheresis and from that they will develop the vaccine I will be receiving. That process took about 3 hours. Then in the afternoon it was to the chemo room from a huge potpourri of poisons – Decadron 40 mg & Thalidomide 200 mg (both P.O.), Cytoxan, Cisplatin, Etoposide and Adriamycin all via continuous infusion via pump so I carry them around in a camera-type bag. I go in every day to have the bags changed & dressing checked. These all go for 4 days then it will take about 10-14 days for my counts to drop & recover then we will begin to harvest stem cells and start vaccinations, etc. Additionally I am on Lovenox because Thalidomide can cause clots, Levaquin, Diflucan, Acyclovir, and Zantac. If things go well with the stem cell harvests – it takes 2 to 6 depending on how may stem cells I produce, we may be able to return home a few days for Christmas, but I’m not going to jump to any conclusions.

This morning I woke up with a headache & queasiness. I took my pills then waited a while and ate some oatmeal which I barfed up in < 5”. I actually felt pretty good after that. The rest of the day went well but I have been kinda grumpy which as you all know is unusual for me. This afternoon we were in & out of the clinic in about 1 hour which is real good. The weekends appear to be pretty quiet.

Mary Jo has been spoiling me rotten so I really gotta say it’s all bueno!