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squamus & PET CTs

Posts: 187
Joined: Apr 2010

Hi to the "old Guard" and hello to the new on this site.

(In continuation of my post:"Hallways and marathons" Sept 9.)

My wife who cannot have Chemo or RT because of Fanconis Anemia, stopped Erbitux after 3 months owing to very severe effects.

She now has a flippin lump on her neck. In June this year the PET was clean and only two weeks ago there was no visible lump and ENT and Onco doctors saw nothing and felt nothing when they did their neck "squeezing-massage-feeling for lumps" bit.

Today we had needle biopsy and the Doc did two needle pokes; the second in an attempt to draw out fluids but didnt really succeed.

She said it was "behaving" like squamus. Solid 2.5 cm according to the ultrasound and produces fluid too. So the lump has remained.

If this is squamus, its frightening cos acceleration is high , isnt it?

if this is squamus, she will have to go back on the biological warfare Erbitux ,which she hardly tolerated. Not much left to cut out in the throat region.

She has clawed her way back from successive surgeries, physically removed her own
J-tube, "fought" the docs to remove her trache a few months ago, so she could feel what it was like to be without something attached to her. She even got up from the table just as they were about "to port" her, as her veins are pretty much done. That was a two months ago.

Eating + coughing, as a result of the last three surgeries + lung lobectomy, is a constant.

The thought of further suffering is just destroying.The next two days until results is going to be a long wait. I feel like im precipitating "going away".The feeling i got every time there was surgery. Robot living.

I have no practical advice to ask of any of you i suppose. To be painfully honest, i think im posting this because i want to make sure ure going to be there if i need you; cos this might be a long "going away".

(After the doc and biopsy etc, we went out to buy handles for some closets at home. How boring is that"?!).Ok , i recon i lost it slightly today.


Posts: 363
Joined: Feb 2010

Sorry things are this bad for you. Have you thought of any more opinions? I understand where you are coming from, my mom was the same way with bone cancer.
I understand about being tired I was giving up in my third week and told them I was quitting. My wife said no way and the docs just stressed how close we were.
You cant quit,there was no way my wife was going to let me, so please dont let your wife give up either. I know that is easy for me to say, but please.
I know about the poking and prodding, but the port a cath was an important part of her treatment and she will and get thru it.

What kind of severe effects was she having? I believe I had a allergic reaction my first infusion but was fine after that. The rash and finger & toe nails were another. I lokked on the toenails as it was working its way out and told it to ge the heck out. LOL

I wish you well and you have my prayers on whichever decision you & your wife make. Love

Kimba1505's picture
Posts: 557
Joined: Apr 2010

We all know the fear. We have to go there sometimes; and that is okay. The network here will surround you until you get your bearings again, regardless of how long that takes. I so much wanted this fight against cancer to be a "we" thing. I always spoke (wrote) in terms of "we" and "us". It wasn't until sometime in Mark's post treatment that I realized how much it really was just an "I" thing for Mark. No matter how much I wanted to be in there fighting against this thing that has invaded our lives; it was him in there taking all the hits. We want to help so much; but are very helpless in many ways...and then we are scared.
I agree with Dave to support and encourage her in her fight; and also respect her dignity.
Come to us to hold you up during this time; to fall down is not an option.
My Best to you and your wife...good energy being sent your way.

staceya's picture
Posts: 720
Joined: Jan 2010

You are in my prayers. Was she able to take any meds to combat the side effects of Erbitux?
I have read of people using the following:
1. Orals Meds
2. Topical Meds
Biafine cream
Vasiline-impregated gauze
as well as obtaining a derm consult. Some of the above things can be done preventively.
Also have you talked to Sweetblood (You can PM her) she has the same anemia.
Good luck.
we are with you in spirit.

Jan Trinks's picture
Jan Trinks
Posts: 477
Joined: Apr 2009

Hi Clearblue:

Just wanted to let y'all know you're in my prayers. Don't know that I can say a whole lot except I truly know how you feel. I was such a basketcase with my husband and all he went through when his cancer returned with such avegence. But I do believe it's important to remain as positive as you can no matter what and yes, that's easier said than done. Prayers to y'all and God Bless!

Jan Trinks

Pam M's picture
Pam M
Posts: 2196
Joined: Nov 2009

Man, I really want to say "maybe it's not that - I hope so". I know that two days wait for results can be a very long time. I hope that whatever the docs say, the folks here can help you in some way.
As for shopping for closet handles being boring - there have been times for me when boring was the goal.
Deep breaths. Keep us updated.

Posts: 187
Joined: Apr 2010

The docs got back to us quickly within 24 hours ( it must be my abrupt manner).

It is squamus. So theyve ordered another PET CT for thursday,and then will decide re surgery and treatment, Erbitux for sure. ( wonder if theres any pre prep that can be done before doing erbitux)

The last pet was clean. Im sure it was a false negative.
Im going to insist that they do an mri between each pet ct from now on.

OK Pam i'm convinced, BORING is the goal.


Posts: 1846
Joined: Aug 2010

That was quick!

This waiting is hard, I know.

You and your wife are in my thoughts and prayers.

Hugs. Lots of hugs.

PattyNC's picture
Posts: 65
Joined: Oct 2006

Clear, I was struck by your search for closet handles. I'm on the hunt for same so pls add me to your boring club. You are such a supportive and caring husband. With everything else bearing down on you, you are still deligently working on "honey-do" list for your wife. Good job, guy.

As caregiver for my brother Mikey (squamous cell head & neck with occult tumor in 2006) ... just a few days ago I was telling my husband we needed to go to Lowes to find closet handles to put on Mikey's closet. My brother is now living in our guest room. Years ago we put new closets up in there but never got around to finishing the handle part. So everytime Mikey or I hang up his clothes, we have to PRY the doors back best way we can. It's one of those little daily pains and aggravations. Now I'm inspired to run out & fix his doors for him ASAP. It's a little normal challenge that even I can conquer. Other things for Mikey, I'm unfortunately not able to repair, mend or make better. He's alone really in that physical struggle. I do try to prop him up mentally. That's seems the best I can do.

Prayers for your wife and for you! You sound to me like a real jewel so don't give up. Fight & vent & do whatever you need to do to get though it. You are a good husband.

kimmygarland's picture
Posts: 313
Joined: Aug 2009

Thinking of you and your wife as you travel down this awful road again.

Sometimes it is the mundane things, like closet doors, that get us through the tough days.


staceya's picture
Posts: 720
Joined: Jan 2010

double post- sorry

staceya's picture
Posts: 720
Joined: Jan 2010

I do not have personal experience with Erbitux, but have read that the meds I previously listed (check with your docs) can be started pre- prep.
Thinking of you,

Posts: 14
Joined: Jul 2010

Will be with you both.

Greg53's picture
Posts: 848
Joined: Apr 2010

Will be thinking of you and your wife and sending positive thoughts your way!


Posts: 32
Joined: Sep 2010

Sending all good vibes and prayers your way, glad to know you can still vent....good for you and keep it up. We all deserve it, our day to say what we have to say. denise

Hondo's picture
Posts: 6643
Joined: Apr 2009

I am deeply sorry to hear this but will continue to make your wife a matter of prayer

Posts: 187
Joined: Apr 2010

Thank you everyone, sincerely.

Today "we" had the PET CT. I assume that on Sunday evening or Monday the latest well have results. I so hope that besides the "lump", there's nothing else elsewhere.

Prayers for everyone here


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