UGH, the wait is on

[Karen]

Doing the happy, happy, joy dance for you from Seattle!!!!!

[Russell's Mom]

Thanks for the good news!! Doing the waiting game here too. Russell will have his second post-op CT soon....I hope. Kaiser (which I have learned means the Emeperor...... ) somehow forgot to to order the scan for him. Finally today I called directly and opps, the MD did not put a priority on the request and his order was mixed in with 130 other requests...attmeping to be handled by one nice recepionist. I see Kaiser as a tower of Babel. I now have a bit of a political spoke on this wheel and I don't mind sharing the story. Hopefully the news will land on careful ears. Trying to turn the waiting energy into steam. Hmmmmm possibly new idea for running cars! I could drive for miles!!! Will be thinking of you Maria!!!!! Take care, Sharon

[Chris'Mom]

I love to hear the good news....Mary Ellen

[mercyriver]

Yeah! Glad to hear everything is still great.

Becki

[DAWN82]

Woo Hoo!! congrats!!! glad to hear the good news i knew it would be
An early christmas present!!

Dawn

[Fish]

Margaret:

I'm glad to hear the CT and AFP are normal!!!!!

Regarding the genetic abnormality in his clotting.... the clotting pathways are complex and involve many different plasma proteins. Everything is normally in balance until a trigger is set off.

This is from Drkoop.com, I don't know if this is the abmormality they found. But as you can see lack of Protein C or S can result in a tendency to form excessive clots. Hopefully, whatever the cause, it can be managed successfully. Best wishes!

Congenital protein C or S deficiency is an inherited disorder that causes abnormal blood clotting. Normal blood coagulation is a complex process involving as many as 20 different plasma proteins known as coagulation factors.

A series of complex chemical reactions using these factors takes place very rapidly to form an insoluble protein called fibrin, which stops bleeding. Other plasma proteins, such as proteins C and S, inhibit or reverse this process to prevent excessive clotting.

When certain coagulation factors are deficient or missing, the chain reaction does not take place normally. In this disorder, an increased risk of clot formation, called thrombosis, is present. Risk factors are an individual or family history of recurrent blood clots in the veins.

There are different types of genetic transmission of this disease. Heterozygous (one normal gene and one defective) protein C deficiency occurs in approximately 1 in 300 members of the general population. Protein S deficiency occurs in about 1 in 20,000 people.

[Fed]

Margaret,

This is good news on multiple fronts, so I send my congratulations to you and Boyce for all that. I am really happy for all of you.

As far as the mutations, on what gene were they? The coagulation cascade is a coordinated effort that involves over a dozen proteins (clotting factors). Some people have mutations that completely remove one of the factors (hemophiliacs, for example, have deficiencies in either factor VIII, IX or XI); however, it seems that Boyce might be carrying a mutation that only modifies a protein rather than deleting it altogether. The mutated protein likely has stunted function causing the coagulation problem.

Hope this clears things a bit.

[Margaret]

We got updates on everything so I figured since you guys waited with me, i would post the results.

The CT scan was clear, hip hip hooray

They drew about 8 tubes of blood to do some further testing on the blood clotting issue and the testosterone.

They did discovered (to their surprise) a genetic mutation in his blood that creates clotting problems. Chances are he has had it undiscovered since birth. The cancer, combined with the port and chemo….made it hatch into a full blown problem. Does anyone know anything about genetic mutations and how that relates to this clotting? They did not give us much information.

They are going to watch it and it is good to know if he is ever operated on he needs to alert his doctors so they know to avoid potential problems.

He is still having low testosterone problems and goes in for more blood work this month to see if there has been any improvement. They are trying to decide if he will need to be on medication the rest of his life for it. I think it has not improved because he is still having a lot of side effects like weigh gain, headaches, and fatigue.

Overall I am glad they discovered the genetic mutation and the fact that his AFP and CT scans are good is wonderful.

Love love love,

me

[MRMRSU]

Hey Margaret...I've always thought that time is both a blessing AND a curse. Waiting right along with you. Andy's next markers are a week after Thanksgiving...hoping for good results for Boyce's CT scan. Glad to hear that the other numbers are within normal range and the bloodwork is all clear.

Domenic, great news on Alex!

Karen my Jersey sis, great news on Ray!

Joe, hang in there...keeping happy thoughts for your Monday appointment.

[Margaret]

Glad to hear the test results are good! I don't like to hear that 35% chance of another kind of cancer from the chemo. I thought it was more like 1% chance. How did they arrive at 35%?

Boyce, eat healthy! And go ORGANIC!

God bless,
Tammy

I miss-spoke when I typed it...Boyce scolded me ...because it is one out of 35, not 35%. So our onocologist was very clear with us that one out of thirty five will have another form of cancer due to the chemo. So I walked out with 35% in my mind...sorry for the confusion. I realize that chemo comes with risks and that we will have to face these. But I am so glad chemo was there, stopping that cancer!

Boyce's CT scan is next Tuesday, just sitting here waiting.

[mstlyn]

Alex just went for his 2 month blood work. I called the doctor's office the next morning for the results like I always do. The routine is they take my number and tell me the nurse will call me back. This time they take my number and say the doctor will call me back.

I hang up the phone and have a total mental breakdown. "Why is the doctor calling me back,oh my God they found something, oh no how do I tell Alex, my wife,I can't do this again so soon."

Total bloody insanity in my head. The phone rings a few minutes later and it is the nurse with the all clear and I relax. Amazing how the word doctor set me off so easy.The fear that is lurking in the back of my mind never goes away, ever.

Domenic

Congratulations on the all clear!

I know that when Im waiting for Anthonys markers I get anxious, but I don't realize until after they come back to the phone with a normal result, and I hang up and cry; just how tense I get while waiting.

[mstlyn]

Sorry...I double checked the numbers...sorry for any anxiety I caused.

He said 1 out of every 35 will get another form of cancer from the chemo...not 35%. I hope this helps and I really hope I did not worry anyone

I am not sure why but he rattled off a few different kinds of cancer that they will continue to watch for. But I am not sure why the risk...I will research it and see if I can find out. Our doctor did say that Chemotherapy treatments also happen to be carcinogenic.

But 1 out of every 35 is a lot better than 35% !!! Sorry again

Sorry I didn't read this before I asked about the 35%, so disregard my question. 1 in 35 still sounds high to me though

[mstlyn]

Great news on Boyce! I'm thrilled to toss in an "all clear" for Ray today as well.

So Joe, ya gotta keep this theme going....when do you get your results?

Congratulations on the all clear!

hugs

[mstlyn]

Hey Joe! you can be on the wait with my Husband. His appointment is too 11/19 at 1pm. I am still trying to get him to join the BB.

Jilleighn,
Prayers for your husbands all clear.

Tammy

[mstlyn]

Congrats to Boyce and Ray!
My appt with my oncologist was postponed until Monday 11/19 at 1:00.
Waiting, waiting, waiting...

Aw Joe, Im sorry they are keeping you waiting- waiting is too stressful. An all clear for Joe in my prayers.

God Bless,
Tammy