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

Thanks Eileen.

I still don't have a clear understanding as to why, but sis-in-law has something against Sloan Kettering. She cancelled the appointment that it took me nearly 8 weeks to get. They have cancelled two appointments there now, and argue with the family when we question their logic. As she is considered his primary care giver being his wife, I don't really have any sort of standing to override her - and sadly, my brother is too weak minded right now to override her himself.

Although I'm not defending anyone i know I get defensive when other people question the decisions my husband and I have made regarding his treatment. I realize family members want to help and that in itself is a wondeful thing, however it tends to make me nervous and defensive as I believe we make the best decisons based on what his doctors discuss with us. Believe me when I say your brother may have already made his decision about how far he's willing to go. My husband has told me that this is his decision, not mine, and he will let me know when he's had enough. Please know I have only the best intentions and wish you peace in this most stressful of times.
Sue

Is it only Sloan or does she not want a second opinion from any hospital other than one he is being treated in? There are several other good hospitals in NYC. If she is willing to go to another one, maybe Brian could recommend one for you. Actually, his current doctor should be able to recommend one also.

Take care,
Eileen

Colleen, This sounds like an incredibly hard and confusing time for you, your brother and sister-in-law and the rest of the family. I'm so sorry. The thing about "time for hospice" is that no one really knows for sure. Its a doctor thinking that he is *likely* to have 6 months or less to live. That's all.

That doesn't mean that there may not still be treatments that can ease his symptoms or give him a little more time. Radiation can sometimes be used as palliative treatment and I think someone needs to be asking if that is why it is recommended. Same for the chemo. What I would want to know is what are the advantages of having radiation and chemo at this point? Is it being recommended because there is a chance of remission of his disease or is it just goung to maybe slow it down? If it's the latter, how MUCH does it slow the progression down on the average and what are the side effects he will be experienceing in exchange for the time it buys or MIGHT buy?

Personally, I would not want to go through more radiation or chemo unless I knew it would probably add some good quality time to my life. If it only adds a month or two, on average, and might make me really sick, I realy wouldn't be interested. But we all make our own choices at this point. Some people want to fight as hard as they can for absolutely as long as they can. But good decisions can't be made unless he gets those questions answered.

Nelie

Colleen,

Like I said before I think you should get to a CCC, like Sloan, ASAP. Don't waste another second and get an appointment and see what they say. Be sure and take all his records and scans. Pick up the phone right now and get moving. That's a friendly order.

With all due respect, it is the patient's decision.

Good morning.

They are giving him the radiation and chemo as palliative measures. I appreciate all the sound advice on getting him to a CCC center, etc. However, as said previously, I AM NOT his primary person, that is his wife, and she cancels every appointment I make.

That said, our concerns have run the gamut - last week it was his platelets (now up), then it was his white count (still waaay too high), but the last two or three days it has been his breathing. It is very labored, and the doctors have said the cancer in his lungs is just too profuse. They told him Saturday that he was terminal and would not survive. He seems to have accepted it (I think he knew anyway), but still vows to fight on.

I was worried I had become to close to the situation and had lost my perspective on how bad he was, and I had. When my other brothers and sister arrived they were all shell shocked.

Having been at the bedsides of my mother and uncle when they passed, I have come to understand that he is very near to where they were in the days just before. I anticipate that God will take him before mid-June.

Thanks again everyone for all of your support.

Colleen,

I am so sorry you feel so powerless to help your brother. It must be an awful feeling and I pray that you have the strength to simply be there for him and your siblings during his last days.

Sending hugs and thoughts,

Deb

Colleen, I was so sorry to read your latest news about your brother. I know what you mean about losing perspective. My father, who had congestive heart failure problems for years, went suddenly downhill right before he died and my mother didn't really notice it the way others did beause she was there for him everyday. It's good your other siblings are there now- I hope you can all be present with him in the time you have left and also be a comfort to each other.

I am keeping you in my thoughts.

Nelie

You must feel terrible about this situation, but maybe it's your brothers wishes not to be treated with rads and chemo if they won't keep him living years longer. You have all my best feelings going with you, but if I have to do it again, I want a guarantee that I get years not a few weeks. I want what life I have left to be quality and me in control. My family agrees with this.

Oh Colleen - sending warm thoughts and hugs and prayers to you and your family!

Good morning everyone.

I'm sad and heartbroken. My brother passed away Thursday, June 5. My brothers, sister and I had a lovely day with him on Monday, June 2. On Tuesday morning we received a phone call from the hospital to hurry on up there, they had found my brother unresponsive and were doing CPR on him. He had had some trouble with gagging on his phlegm, and couldn't seem to get behind it. Turns out he aspirated his vomit. They could not tell us how long he had been without oxygen, but it took them 20 minutes to resuscitate him. He went into a deep coma and when they took brain scans, there was no activity. The decision was made to halt any further treatment to keep him alive, and he passed quietly and in no pain.

Thanks to everyone on this board for your support and good advice. I wish he had been seen at Sloan Kettering from the very beginning, however, my sister-in-law kept cancelling all the appointments that were made for him. I'm not sure why, other than to say it was an inconvenient location for her. She and our family have never gotten along well, and it is sad for my brother that she was the one making the decisions, as his wife, and we were discounted in everything, right through the funeral.

My brother provided for her very well, and has left quite a legacy for her. On the Saturday prior to our visit on Monday, my brother was told by his doctor that he was terminal and would not survive. Oddly, that was the time that my sister-in-law chose to go back to work (she had been on FMLA leave). Monday after our visit, he begged her to stay the night with him. She was the only one allowed to do that as his spouse. She refused and went home, saying that she had to be at work the next day. This job was something to give her some pocket money, it did not pay the bills. Of course, Tuesday morning was his big crash, and I just can't help feel that it could have been a better outcome had she been there. She said as much at his bedside in the ICU in the moments right before his death. I hope she regrets that decision for the rest of her life. I know I will.

Had to vent a little of my anger at her. Thank God I don't have to have any further dealings with her (at least not in person), and that she will be out of my life forever.

Again, for anyone reading this, don't wait. Go to see your doctor at the first sign of ANYTHING. It could mean the difference of whether you live or die.

Thanks everyone, and God bless.

Colleen,

I am so sorry for your loss. I am sure that your brother knew the depth of your love for him. You and your family are in my prayers.

Jean

Colleen i am sorry for your loss.Dont waste your emotions on anger,just try to remember the good times.

god bless
liz

Colleen,

I am also so sorry for your loss. I imagine you are going through a whole range of emotions right now, grief, anger, sadness, guilt - I know I did when my own brother died in an automobile accident. For me, it did get easier, but its been 14 years, and I still miss him terribly.

All my best to you and to your family.
Margaret

Colleen, I'm so sorry you lost your brother. You're welcome to vent here as much as you need. I hope eventually both you and your sister-in-law come to a place of peace over your brother's death. I'm sure that's what he would want, isn't it?

Nelie

Colleen- I'm so very sorry for your loss.

Colleen,

I'm sorry for your loss.

Colleen,
I am so sorry your brother lost his fight. I hope your memories of him help you through this difficult time. My deepest sympathies to you and your family.

Take care,
Eileen

Colleen:

My deepest sympathies to you and your family at this difficult time.

Thanks everyone for your expressions of sympathy. I will tell you a few things about him briefly.

My brother had an infectious smile. When he smiled he lit up the room. He was a Lieutenant in the Nassau County Police Department. He was known for being somewhat of a cheap-skate - my mother called him frugal .

On the day of his funeral, the police department was so wonderful to us. It began with a motorcade from the funeral home, led by 17 motorcycle cops, and followed by five police cars. In the course of one morning, we shut down Hillside Avenue, Lakeview Road, Northern State Parkway, Meadowbrook Parkway, Southern State Parkway (twice), Sunrise Highway, Merrick Road and Merrick Avenue.

When we arrived at the church, no less than 200 police lined the street saluting, and there was a bagpipe band of about 30 strong.

While nothing will ever make me feel okay about having lost my brother, the respect shown to him and to us on the day of his funeral sure did take the sting out of it a bit.

I will say my prayers every day for all members of this wonderful board, that you recover from your illnesses and that you do not have to face a recurrence.

Be strong, keep the faith, and keep fighting.

Love to all,

Colleen

Colleen,

I am so sorry for your loss. Your brother must have been well regarded in the police department. I was raised on Long Island in Nassau County so I know that's an impressive feat to have all those roads closed. It's an amazing tribute.

Colleen,
My sympathy to you and your family. Your efforts to help him were sincerly admired. As time passes, you will G-d willing remember all the good and the unpleasant will fade. Your description of the tribute to him from the police force was touching. It is a testament to the fact that although he was so ill he was still "on duty." You were certainly blessed to have such a brother.
Malka