Hi everyone. It's been a while since I've been in touch, but here's what's goin on and I would appreciate any feedback anyone might have.

So, my brother began his second round of Chemo (taxotrene 1x, cisplatin 4x and 5FU 4x). Then he was running fevers and had low white counts. My sis-in-law and brother were not happy with the treatment he was receiving at LIJ and so he was transferred to Winthrop. Meanwhile, we were told there was further metastasis to the lungs, even while he was on chemo.

After his transfer to Winthrop he was still running fevers and then became neutropenic. I understand that is a common side effect of chemo. While he was neutropenic his platelet count dropped, and so he was being given hemoglobin, red blood cells and platelets. I am told now that his white count is up, red count up but platelets are still low. Over the weekend the platelets fluctuated between 10 and 17. Yesterday they were at 21 or so. I know this is incredibly low, but Sis-in-law says they can send him home at around 30. That scares me because if he hurts himself, he could have trouble clotting.

I am told he is no longer neutropenic. Is that possible?

Also, he has been put on oxygen, which he should probably be wearing 24/7 but wears only grudgingly and must be reminded constantly to keep it on.

He has lost a lot of weight and muscle mass. No PEG tube has been suggested. No radiation has been suggested.

Under his current regimen he should begin round 3 of chemo on May 31, but with his platelets so low they won't let him begin. Also, they need to switch up the chemo regimen because he is obviously not handling the current regimen well at all. But before they will tell us what they want to do, the want to do a biopsy because they're not sure that what is in the lung is the same SCC that is in the face. Is that possible? Also, they won't do the biopsy before they get his platelets up because of the risk of bleeding.

He just seems to be going downhill so fast.

I have finally been successful in getting him an appointment at Sloan Kettering, but wonder if he will be able to keep it (we can move it though), or if we are just too late to do anything.

Any suggestions or comments anyone may have would be welcome.

Colleen- First of all let me say how sorry i am that your brother is suffering so. My husband had the same oral SCC show up in his chest. It is what is called a distant metastasis.This occurred while he was undergoing chemo and radiation. They tried Erbitux on him but it just got worse. Now he is on Taxotere to see if this will slow it down. We also went for a second opinion to Sloan and they agreed with the doctors we are seeing now. Maybe you can move his appointment up. Do they know all the trouble he's having? Feel free to send me a PM if you need any more info.
Sue

If it were me I would want to continue to try to defeat this beast(s) so I would want to be evaluated by the best, like Sloan, and I can't believe that it's to late.

As far as the possibility of another form of cancer in his lungs, I would have to say that is a possibility but when I was going thru my Tx I was told that the progression of SCC is from the Oral Cavity to the nodes and then to the lungs and/or brain. Either way I would think a biopsy of the lung would prove beneficial to any Tx plan.

I am sorry that he is having this reaction but I would still hope he continues to fight.

Hi everyone. Thank you so much for all of your support.

I was told by his doctor last night that it is time for hospice, and that I should get my brothers and sister up from Georgia as soon as possible if they want to be able to have any memories with him before he becomes incoherent.

I just cannot believe it. He says it will be weeks/months but my instinct tells me it will be a matter of days or weeks.

We did try to fight it - but I think it was too late - too late with the diagnosis, too late with the beginning of treatment, too late getting to Sloan - just too late.

Keep fighting everyone.

Colleen- I'm so very sorry. I hope you still have some good times ahead with your brother. Try to do the best you can to give him quality of what time he has left-you are a wondeful sister. Praying for you.
Sue

Thank you Sue.

We are going to give him the very best of everything we can while we can. He so dearly wants to be at home, and so we will arrange for hospice care there, with all palliative measures available to us. My sister and brother are coming to NY tomorrow.

I can't even think about it now, but for anyone else reading this who is afraid to go to a doctor to find out what that thing is in your mouth - please don't put it off, not even for a minute. My brother started noticing something in his mouth, a canker sore he thought at first, in October of 2007. It grew and grew but he never went to see anyone until late February, and he was finally diagnosed March 17, 2008. Please don't wait, even if you are terribly afraid.

Keep up the good fight everyone. It is beatable, you just have to get to it in time.

I'm so sorry Colleen. This cancer can be so horrible if it's left alone to long.

Even if a doctor tells you "it's nothing", and you think it is-find a doctor that believes you and insist on a biopsy. My husband KNEW something was wrong and was told not to worry. He is now on palliative chemo at the age of 47.
Sue

I am so incredibly confused.

Brother was up and about last night, sitting in a chair, ate most of his dinner and was fighting off the fatigue and trying to stay awake.

They found an absess in his liver and put in a drain. His white counts are back up so they removed his port, thinking it may be infected.

A new ENT came in to examine him, consulted with his main oncologist - the guy who told me it was hospice time and to get the family here - and now they are proposing Erbitux and radiation.

I am all for anything that will help my brother to live longer and better, but I am now questioning the wisdom of radiation. Having read through all the different blogs on this forum, I have a pretty good idea of what the radiation will do to him, and if Doctor Doom was correct, should we really be putting him through all of that if there is no hope?

What do you guys think?

Colleen,
Does this new doctor think it will 'cure' it, or is it just palliative. I think I'd make that appointment at Sloan and tell that you need this second opinion in a hurry.

Take care,
Eileen