Update on progress or lack there of...

[NS8000]

Well everyone it's been a long couple of weeks. I ended up in the hospital on Sunday morning with a classic fever (temp of 39.1c) which meant I was stuck stuffed up in a isolation room for 3 days, got my freedom 2 days ago but have to go back every 8 hours for antibiotics. Fun stuff. Although my counts are very low still the stem cell recovery is working well (counts are all on the rise, and the immune system is close to fully functioning).

On another side of my cancer life, the docs have me booked in for chemotherapy on monday morning (another BEP cycle), but there is a problem here, aside from low counts (Hemoglobin is only 83 (normal 150+), and platelets are 28 (absolute minimum is 60)).

One of the main germ cell specialists at the hospital is see'ing me right now (my doctor is on vacation until monday next week), and he says I should not receive any more chemo as he believes that one more dose will kill me, and that I should be effectively done all "cancer treatment" as I am in the 5% of un-treatable testicular cancer.

And now my main doctors head nurse also is saying the same things, but they are still full ahead with chemo on monday. Which leaves me standing here going.... (sorry for the curse) WTF is going on?! They haven't even checked what this current BEP cycle did to the cancer and they have no idea what was even happening prior to this BEP cycle (what was caused by the trail drug I was on). So i've literally been standing here for 1 month without any knowledge of what is going on. Needless to say i'm very very frustrated at the moment.

Well that's what's happening.... or as good as I can describe it at the current moment. I'm basically open to all suggestions possible!

[Margaret]

First of all...I am really sorry you have had such a tough go of it. I wish i could bring you lunch and a movie and take your mind off things

Have you or your doctors considered a blood transfusion? I think it could help get your platelets up. It sure will make you feel like a new man. Poor Boyce could hardly walk and after the blood transfusion, he looked he could fly.

You are being so strong, I am proud of you.

[Karen]

Niki,
So sorry that you landed in the hospital and that you're in limbo with the treatment. Is there any way your doc can make a phone call while on vacation to consult with the head honcho doc? You don't need to deal with frustration on top of everything else. I don't know that we can offer much in the way of advice, but we are here for you to vent...keep us updated!
Sending you thoughts and positive karma....

[Karen]

When was the last time your markers were checked after sutent?

[NS8000]

The markers the day I started the BEP was 53,000 (bHCG). I will make sure they are tested on Monday next week (3 weeks post chemotherapy) to get an understanding of what the heck is going on. I am really wishing I never went along with the sutent trial now.

[Karen]

Niki,
I can imagine how it must be to look back and second guess your decision, but it is in the past and cannot be changed. Definately check the markers Monday, and keep in touch with us. So what does the onc want you to do instead of BEP? Anything suggested as far as maintainance chemo?

[petep]

i'm certain they will check your markers to at least see where you are relative to before....

I just read back thru all of your other posts, including your initial post - wow...you have gone thru a great deal with a great attitude...

I think the most critical thing at this point is to use all you have read, and your common sense, and ask the docs these questions...and if something does not make sense to you, ask them to walk you thru their logic...why they are pursuing a certain strategy...what is it based on.

in the end, although they are the experts, you must always be your own advocate.

best wishes and keep us posted.

pete

[Russell's Mom]

Let your frustration keep you energized to keep going. There are many helpful people out there. The fever makes me question Bleomycin Toxicity. Make sure to ask them if they have considered this concern. I am going to share a couple of web sites. I have not used them directly, but they come with good recomendation. Maybe there will be helpful people there with some new ideas. Keep or toss as you would like. For Russell's care, we have opened all of the doors and for now I am very thankful for what has come our direction. Don't catch the discouragement of your care providers!!! It sound like they are out of ideas. Your body needs to realize the hopeful possiblities of treatment and health!!!!! Hang on!!!!!
Challengecancer.com consultations here
Cancernutritioncenter.com
Cancercenter.com
These places have a lot going on!!
Take care, keep in touch, Sharon
PS I don't take this lightly, Russell had advanced mets, 4BEP, RPLND, Bleomycin Toxicity, high dose steroids x 9 months

Edited by dadmo to fix hyperlinks

[NS8000]

well it seems being pissed off has payed off. My main doctor was contacted on vacation and she dealt the blow to every other doctor. It seems that she has in mind to give me a full first line treatment for TC. To date i've only been receiving chemotherapy cycles from the second and third line treatment as if I have failed BEP (first line) already. I was unable to receive BEP because of major lung complications, which no longer exist, and as long as my lungs do not get the full bleo toxicity problem.

The idea now is to give me a 4xBEP with the following care. BEP cycle with auto stem cell recovery - BEP cycle with longer break - BEP cycle with auto stem cell recovery - final BEP. Essentially every cycle is going to be a month long. Along with my arguing, on monday I go for 101 diagnostic images followed on friday with the full blood work up (bHCG and AFP) and a meeting with my main doctor where we will discuss how viable BEP is and how well it did in the first cycle.

So this is at least a step in the right direction. Also from my last x-ray the other day, it seems only 1 tumor in my lung went crazy, the rest maintained size or shrunk.

[Russell's Mom]

Wow, what a plan. So good to feel the strong mode through your words. Stay on it, pace yourself! It must have felt good to hear that the connection had been made!! Keep in touch, Sharon

[Karen]

Niki,
If there is only one, or even a couple of , renegade lung tumors you may be a candidate for the CyberKnife (gamma knife). Ask your doc what she thinks.....

[dannysbrother]

Niki,

Your doctors seem to thinking about very novel ideas in terms of treatment. That is encouraging. BEP with stem cell recovery sounds like a plan.

Danny is in a similar situation and in need of creative care.

Can you please, if it's not too much trouble, send me the name and contact information of your doctor in Canada? I'd like to get there take on danny's case.

My thoughts and prayers are with you, Niki.

Thank you,
Mikey

[k.strehle]

yes it sounds like a plan. getting po'd can get results. if its any consulation my treatment was 4 -21 day cycles of bep and 3 - 21 day cycles of tip. i was stage 3c with mets to lungs but really didnt have bleo problems. in nov. lungs were very spotty now clear....lucky with bleo i guess. hope it works out for you...one question...did you have a stem cell replacement?
regards

kendall

[Fed]

Niki,
I just caught up with your thread. It does sound like quite an odyssey, but you are doing everything right. We always say that you are your own best advocate, and I am glad to hear that you have taken charge quite admirably. I hope all this works out well, and keep staying as strong as you have been. Take the bull by the horns and wrestle it down!

[MRMRSU]

Hey Niki: SPOT ON! Good for you that you will not settle for anything less! As the wise Fed said above, you are your own best advocate. Continued gusto and success with your treatment.