Wow that blood thing is scary.

The radiated blood is a bit confusing to me. I suppose they don't want to have certain things in it, but they must really have the radiation down pat to kill off some stuff in the blood but not others. It's not like the radiation cares.

My first thought when it comes to cleaning the blood is like what they do in kidney dialysis, which is filtering it.

My guess is to create super mutated Green Incredible Hulk blood cells.

Yeah the radiated blood is confusing. I know the intent is to keep the good bits but kill the proteins that might confuse my other tests.. The one Doc(GP) said "radiated" and blah blah....so I might be the confused one. Treated or filtered might be part or all of it.

My Red blood cell count today was up to 88(go ginger beef with broccili) so they are holding off on the transfusion until the next test when the chemo starts on April 6.

Odd Drug Fact of the Day

I am on a 3 month prescripton for Chicken Pox. The virus for Chicken Pox never leaves your body and "shingles" in adults is nasty...even nastier for those with no immune system or taking steriods where it can be fatal.

The same virus causes Chicken Pox and Shingles....and it attaches to your DNA???
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Your body never gets rid of VZV completely. The virus usually lies dormant in the nerve root after the initial chickenpox infection, after it "splices" its DNA into the DNA of the nerve cell. Shingles is caused when the VZV is reactivated after many years. The rash of shingles is usually limited to a strip of skin somewhere on the body (the strip is the area of skin covered by the nerve in which the VZV lies dormant). The rash often looks similar to the original chickenpox rash, but it can be very painful; some patients need narcotic pain medicines to relieve the pain of shingles. People who have shingles are contagious (someone who has not had chickenpox can get chickenpox after exposure to a person with shingles), but they are less contagious than\ patients with full-blown chickenpox.

What kind of attention is this getting from the people in your life?

Is every conversation you have about cancer now? Are people extra nice to you for no reason? Does it feel insincere, like that kindness certain people give you only on your birthday?

Are there certain people you regret telling?

What is your honest assessment of your prognosis in months?

Have you had any significant revelations about life or about anything in general as result of this whole experience?

In an ideal world I don't think somebody at your age should ever have to deal with something like this. But I still consider you one of the lucky ones. You've got people who love you. I hope it works out so you can get on your feet more.

i rarely post in the Lounge (except for maybe solo's teaching thread) but lurk alot...

i'm sending some of my accumulated karma your way.

your positive attitude will get you through this.

cue teh herp

I learned that info about a year ago when my friend got shingles. He does MMA, got body slammed and apparently woke up the virus.

Lol. That story about MMA about the stupidest thing I ever heard. What's interesting about shingles that it is normally isolated to the t1 to t5 nerves. It only happens in the thoraxic nerves.

These are great questions

I see what you mean, but this reminds me of that episode of Scrubs where JD tells a woman in her 70s that they have no way to help her. She is going to die. The woman misunderstands him, because all he says is something like, "We'll do everything we can to make the rest of your time with us as pleasant as possible." When she finds out she's actually going to die soon, she gets upset. JD doesn't understand why. She's had a good, long life. Someone else points out to him that to most people it doesn't matter how old you are. You're always too young to die.

My dad got shingles. It was very painful. Apparently when it comes back, it tends to do so in the elderly. It took like a year and a half to go away, too. Ugh.

So I am putting what I think the odds are below and will list reason after. Might not be what everyone expects
Background - 48 year male with no major health issues prior to this. Fairly good condition - Jan 1, 2010 - 6' 1" 208 pounds. Likely 10 pounds overweight. Currently 192 pounds due to steroids(first treatment) and inactivity.




Odds of Death;

• Next 3 months – Near zero and better than yours (and I mean everyone not under medical monitoring) - likely far less than general population. Even with Chemo and cancer, I will have constant monitoring and while I may be sick a lot...almost zero chance of being "Ensign Toast".
• Next 4 months which adds in stem cell transplant – Less than 1% chance of death - immune system nuked... Officially .05% exit during the transplant period, but I am healthier than most patients so ??
• August to Nov - 1%-2% - infection still a big risk
• Next 3 years - 2-5% - If treatment fails and the transplant fails and everything else fails...still less than 5% chance of death. I will be sick and have tons of complications, but will still be bitching about it. This cancer make you sick slowly....so far, except the bone stuff, I'm not too sick yet.

After this, it gets tougher to apply odds- too many ifs

• 10 years – if treatment does not slow cancer much – 80%-90% chance of death in 3-10 years- however treatment is a total failure in less than 5% of patients
• 10 years - if treatment works as in 95% of patients – 10%-20% chance of death. The main factor is how long the treatment holds the cancer down. If I only need treatment once every 10 years or so, I have 30+ years left, if the cancer comes back every 1-3 years, the abuse on the kidneys, bones, and general health added to nasty drugs and their effects start to drag down the number.

I thought I could come up with better long range numbers, but without any idea on my reaction to the first treatment it was about as meaningful as a Nostradamus prediction.

Wow 10 to 20% is pretty significant. Plenty of time if you don't have kids to raise or aren't going to spend it in front of a TV, but it all but removes the option of just mindlessly living through your days the way it's so often ordinarily done.

Italy 2011 sounds great Merek. Looking forward to that trip report. Know that we'll be here in spirit for any tough moments before you get to go.

Radiation Trip to zap tumour growing on/in/under L5 vertebrae and pushing on Sciatic nerve.

Tuesday went to Victoria for Radiation. They nuke the areas from the front and back with low dose radiation to kill the Plasmacytoma(tumour) and hopeyfully over the next two weeks it will slowly rot away and my pain in the leg/hip will go away. So far, no change. 70% chance of success.

You can not even tell the machine is on except for a buzzing noise. The only thing I have to remember the trip, is black lines on my stomach that are used to line up the machine. Very high tech.....99 cent sharpie felt pen.

They don't even put you in a hospital gown. They lay you on a table, throw a small towel over the privates, and tell you to "just pull the pants and underwear down until the equipment almost shows" My doctor, a attractive 30 year old woman, was literally passing me her phone number while I was pulling my underwear up. I think she liked me

Next up is Chemo that starts April 6.

Also got to visit both sets of parents on the trip, as they live on Vancouver Island, where Victoria is.


Plasmacytoma
In this type of plasma cell neoplasm, the abnormal plasma cells (myeloma cells) collect in one location and form a single tumor, called a plasmacytoma. A plasmacytoma may form in bone marrow or may be extramedullary (in soft tissues outside of the bone marrow). Plasmacytoma of the bone often becomes multiple myeloma. Extramedullary plasmacytomas commonly form in tissues of the throat and sinuses; these usually can be cured.




Symptoms depend on where the tumor is.

• In bone, the plasmacytoma may cause pain or broken bones.
• In soft tissue, the tumor may press on nearby areas, causing pain or other problems. A plasmacytoma in the throat, for example, can make it difficult to swallow

Turns out any tranfusion I get does have to be radiated. This is to kill the white blood cells of other peoples blood that can create a host vs graft rejection effect. Apparently standard procedure with this and many other Chemos.
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This type of GVHD is associated with transfusion of un-irradiated blood to immunocompromised recipients. It can also occur in situations where the blood donor is homozygous and the recipient is heterozygous for an HLA haplotype. It is associated with higher mortality (80-90%) due to involvement of bone marrow lymphoid tissue, however the clinical manifestations are similar to GVHD resulting from bone marrow transplantation . Transfusion-associated GVHD is rare in modern medicine. It is almost entirely preventable by controlled irradiation of blood products to inactivate the white blood cells (including lymphocytes) within.

How long did the radiation take? Will you have to go back for another round of radiation?

Have you seen any side-effects from treatments?

A guy I work with was constipated for a couple of months. Finally, he decided to go to the doctor. They told him he had an impacted colon. They gave him medication that he tried for a couple of weeks but had no effect. He returned, was sent to a specialist, and told he had colon cancer.

The weirdest affected part is his fingers. Something has affected the skin so that they constantly split open. He has taken to wearing band-aids all the time just in case the skin breaks and he starts bleeding everywhere.

My first real CHemo starts April 6. So not yet.

The Dexemethisone was a pretreatment and it made you manic/jittery/weak muscles/pimples

Chemo is Dex with Valcade - Being tired and numbness/pain of hands and feet are the predicted issues. Along with mouth sores, bruising/bleeding easy and infections that seem to be a issue with all these drug designed to beat down the immune system.

Soon and for 60-80 days.

gl

Chemo Begins... The real thing

Is anything what I expected?




I am told Chemo Round one will be

• Valcade - (generic name -Bortezomib) by 5 second push/injection in hospital, the next two weeks on Tuesday/Friday, then 9 days off before next round. 3 or 4 rounds
• dexamethasone - oral - 40mg - Tues/Wed Fri/Sat
• pamidronate - every 4 weeks for next 2 years - 3 hour IV in hospital.

Drugs/others as needed

• Imodium - as needed
• Anit-Chicken Pox - every day next 4 month
• Stomach acid reducer every day next 4 months
• Adivan - to sleep - likely 4-6 days a week, 14 days of every 21 day cycle
• Blood tranfussion with irradiated blood that has to be flown in. - First time is Tomorrow - two units over 7 hours. My red blood cells are so low my heart races from 5 minutes of standing. 7 hours with a tube in my arm. Yeah ha..
• Bloods tests once a week.

Summary - I thought my week was two 1-1 1/2 hour trips for blood tests and Chemo...ha ha. When will I learn?




Real Week will be

• Tuesday 4 hours - 3 rounds or blood tests with waiting, waiting for drug, wating for doctor, discussing issues, 5 seconds Chemo push that requires 40 minutes of setup/saline/etc.
• Wed - 7+ hrs blood transfusion
• Thur - 1-2 hours of testing
• Friday - Chemo 2 hours+

Next week we add in 1-2 hours of monday testing and subtract 2 hours on tuesday and everything Wednesday if all goes OK.

WTF - Chemo is like work but with a afternoon nap and a chauffeur.

Probably the hardest job you'll ever have. Hang in there and keep us posted.

Be glad you have a chauffeur then, eh? It must be hard for people who have nothing and have to find some way to stagger home alone.

Ya, Hang in there man. I know I am watching and keeping real positive thoughts and hoping for the best for you!