This is not going to be a fun post.
The side effects are kicking in. It's not much right now, but it is getting worse. Right now it is dry mouth, a 5 lb weight gain in 5 days (and I'm not eating that much) and an increasing sense of nausea.
The dry mouth does not go away and I've already drunk about a quart of fluids from o.j. to water to ginger ale to milk. I can't find something to keep me from that feeling.
The nausea (as expected) had to come sooner or later. The staff has started to give me a pill to dampen it. They said that it had to happen. Okay, so that's the rule.
I called Mercedes and will do the haircut tonight. Right now, if I don't get the haircut out of the way, I'll be a spotted, half-balding kind of guy in a week with a really ugly look.
Better get that "high-and-tight" now.
On the positive side, Mercedes told me that Lola (my cat) is doing well at her house. She is eating and investigating, spending most of the day outside, which is how she behaves with me. That's good. One worry out of the way.
And Cleo (my dog) is doing well with my brother and sister-in-law. I did not doubt that, but also another worry out of the way.
Well, the die is cast. I "crossed the Rubicon" last Thursday when I checked in to Strong Memorial Hospital to start this process. Not much to do now but to ride it out ...
Monday, July 11, 2011
Saturday, July 9, 2011
Friday, July 8, 2011
The Six Million Dollar Man
In a surprisingly relatively easy step, the stem cell infusion occurred today around noon.
The setup was extensive. Lots of preparatory drugs for side effects. The standard stuff: nausea, headache, allergic reaction. The medical stuff: anti-viral, anti-fungal for the dimininished auto-immune system.
But the infusion went quickly and without a hitch. I was loopy for most of it, but it was painless. No surgery. Thank the Lord.
Coming out of it, I ordered a real meal: Chicken noodle soup (what else, of course) and a fruit platter and got it all down which was very different from yesterday.
The two best things that happened today (and they are most mundane): I got to take a walk outside along Crittenden Blvd in the sun, and I got to take a shower.
Yep, things are looking up.
The next major tasks to monitor are: the dropping of my white blood cell count to zero over the next days, and the apperance of the GI track side-effects. Not pleasant to discuss so I won't, but that is why I am still here for the foreseeable future.
I asked why the malphalan does not affect the infused stem cells. The melphalan has an active period of approx 24 hours in which it kills it target cells. It takes days for the "poisoned" cells to clear the system, but the melphalan has done its job. That is why it does not interfere with the cleaned stem cells infused today.
Medicine is so far progressed over even 20 years ago!!
The setup was extensive. Lots of preparatory drugs for side effects. The standard stuff: nausea, headache, allergic reaction. The medical stuff: anti-viral, anti-fungal for the dimininished auto-immune system.
But the infusion went quickly and without a hitch. I was loopy for most of it, but it was painless. No surgery. Thank the Lord.
Coming out of it, I ordered a real meal: Chicken noodle soup (what else, of course) and a fruit platter and got it all down which was very different from yesterday.
The two best things that happened today (and they are most mundane): I got to take a walk outside along Crittenden Blvd in the sun, and I got to take a shower.
Yep, things are looking up.
The next major tasks to monitor are: the dropping of my white blood cell count to zero over the next days, and the apperance of the GI track side-effects. Not pleasant to discuss so I won't, but that is why I am still here for the foreseeable future.
I asked why the malphalan does not affect the infused stem cells. The melphalan has an active period of approx 24 hours in which it kills it target cells. It takes days for the "poisoned" cells to clear the system, but the melphalan has done its job. That is why it does not interfere with the cleaned stem cells infused today.
Medicine is so far progressed over even 20 years ago!!
Thursday, July 7, 2011
It goes by so fast
Amofostine and melphalan went in at 12:15 pm. It took less than 1/2 hour. The chemo injection portion of the treatment is over.
Theoretically all the cancer cells are on the way to extinction. As I understand it, by noon tomorrow, the melphalan will have done its work and killed all the cancerous white blood T-cells. The melphalan will no longer be effective after that which is good because ...
The harvested (and now cleaned ) stem cells are scheduled for insertion into my blood stream tomorrow some time.
It takes several days for two concurrent actions: the cancerous white blood T-cells to purge from my system, and the cleaned stem cells to travel from the blood stream to the bone marrow.
Since the cancerous white blood T-cells will not drop out of my blood stream for several days, there will be multiple monitorings during the day on the current count. Over the next days my white cell count will drop to near zero. (Red blood cell count is not affected.)
Since the harvested stem cells will need several days to travel from the blood stream to the bone marrow, and more days to differentiate into what I need - good white T-cells, this is the critical period where I will be subject to life-threatening infections that any normal person would easily fight off.
Hence the hospitalization for an expected three weeks.
Theoretically all the cancer cells are on the way to extinction. As I understand it, by noon tomorrow, the melphalan will have done its work and killed all the cancerous white blood T-cells. The melphalan will no longer be effective after that which is good because ...
The harvested (and now cleaned ) stem cells are scheduled for insertion into my blood stream tomorrow some time.
It takes several days for two concurrent actions: the cancerous white blood T-cells to purge from my system, and the cleaned stem cells to travel from the blood stream to the bone marrow.
Since the cancerous white blood T-cells will not drop out of my blood stream for several days, there will be multiple monitorings during the day on the current count. Over the next days my white cell count will drop to near zero. (Red blood cell count is not affected.)
Since the harvested stem cells will need several days to travel from the blood stream to the bone marrow, and more days to differentiate into what I need - good white T-cells, this is the critical period where I will be subject to life-threatening infections that any normal person would easily fight off.
Hence the hospitalization for an expected three weeks.
Here We Go! Let's Rock!
Got the call yesterday. A bed is available. Be at the Stem-Cell Transfusion Unit at 8:00 a.m. the next day.
=========
It's the next day and I am checked in. I've got my pressurized room. Had a nice intro by Tracy. I'm unpacked and ready to go. Waiting on orders for the melphalan and amifostine.
Started the ice therapy which is sucking ice chips continuously as a form of cryo treatment for the mouth and throat. The melphalan, in addition to destroying the cancer cells, will also destroy the protective cells of the GI tract. I'm guessing this is going to make me feel miserable, based on what I've read and what I've been told by the medical professionals.
So let's coin a couple of space-adventure themes here:
" To boldly go where no man (or no one) has gone before ... "
" And so it begins, ... " --- Babylon 5
=========
It's the next day and I am checked in. I've got my pressurized room. Had a nice intro by Tracy. I'm unpacked and ready to go. Waiting on orders for the melphalan and amifostine.
Started the ice therapy which is sucking ice chips continuously as a form of cryo treatment for the mouth and throat. The melphalan, in addition to destroying the cancer cells, will also destroy the protective cells of the GI tract. I'm guessing this is going to make me feel miserable, based on what I've read and what I've been told by the medical professionals.
So let's coin a couple of space-adventure themes here:
" To boldly go where no man (or no one) has gone before ... "
" And so it begins, ... " --- Babylon 5
Tuesday, July 5, 2011
So What Is POEMS Syndrome?
This is my understanding by reading various articles. It is not a medically, authoritative article, but is simply how I understand what I have.
Must be present:
Must be present:
- Polyneuropathy
- Monoclonal plasma cell disorder (myeloma)
Strong indicators:
- Sclerotic bone lesions
- Elevated VEGF. Signal protein to create muscle after exercise/new blood vessels.
- Castleman's Disease (non-cancerous tumors in lymph nodes)
- Elevated paraprotein (m-protein)
Possible indicators:
- Endocrinopathy (gynecomastia/ hypothyroid)
- Organomegaly (spenomegaly)
- Papilloedema
-Weight loss > 10 lbs
- Significant fatigue
- Erectile dysfunction
Sunday, July 3, 2011
A Day Without Side Effects
I never thought it would be feel so good to do chores around the house. (Actually that's not true, as anyone who has recovered from a 48-hour flu knows.)
But I have not had the flu in awhile, and yet today, I vacuumed the floor, cleaned the bathroom and kitchen and did some laundry. What amazes me is that I could not or would not do these chores in the previous few days. I had the time. I simply did not have the energy. I had the inclination, but not the will.
Go figure that paradox out.
Chronologically, I completed the apheresis last Tuesday (5 days ago) and am waiting for a bed slot at the transfusion unit. Found out that neupogen is in my future when they inject the melphalan and take my immune system to zero. If one does not know, the neupogen stimulates stem cell production.
Speaking of chores earlier, I've still got to iron clothes (maybe tonight during TV) and I've got to clean the microwave and refrigerator. Such mundane concerns!
But I have not had the flu in awhile, and yet today, I vacuumed the floor, cleaned the bathroom and kitchen and did some laundry. What amazes me is that I could not or would not do these chores in the previous few days. I had the time. I simply did not have the energy. I had the inclination, but not the will.
Go figure that paradox out.
Chronologically, I completed the apheresis last Tuesday (5 days ago) and am waiting for a bed slot at the transfusion unit. Found out that neupogen is in my future when they inject the melphalan and take my immune system to zero. If one does not know, the neupogen stimulates stem cell production.
Speaking of chores earlier, I've still got to iron clothes (maybe tonight during TV) and I've got to clean the microwave and refrigerator. Such mundane concerns!
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