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All i can do is gasp

Clearblue
Posts: 188
Joined: Apr 2010

Decided to make this a separate one time posting.

All i can do is gasp in awe at how you all got through the H&N, RT hell.

I understand that coupled with the rads itself, is surviving the rad effects as time goes on.In any case,it is a celebration , for want of a much better word, that this is behind you all and you can all share your experiences . KC, be encouraged by this.

My wife is fighting successive stubborn scc in throat and neck. She's about to have her 4th surgical procedure. Doing everything possible to avoid RT. I read all your posts , with the dread that we'll need to backtrack and read it through in the near future. I fear that if she chooses RT, recommended as a very bad (because of Fanconi Aneamia)but the only alternative around, her base start is a compromised one because of everything she's been through to date.

She has a healthy resillient spirit and her every minute, like many on this site is the work of breathing, eating and attempts towards normalization . Symmetry and life balance are important to her; like others here have suffered as a consequence of successive surgeries and treatments.

The accumulative weakening effects of so many surgeries clearly challenge her resilience.

Very soon, she will have to make the inhumane wretched decision, by herself, to undergo RT and play guinea pig.

We're going to need you folk in the future.

Clear
Also :clearblue72@gmail.com .

SWEETB: Great to hear you're doing ok.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

It is casual enough for any of us to urge you and your wife (your wife in particular) to 'hang in there', to 'stay' strong' and all of that, and all of that is true; who knows, maybe encouragement like that got someone in here through it all and to daylight.

But it means not so much to someone facing a very difficult decision, as your wife is. I clearly do not know the ramifications of the RT on your wife's quality of life, but I would ask her this: after all that you have been through, are you willing to give in now?

And: after all that you have been through, why be miserable? Why not celebrate each and every day.

They are sometimes competing questions, I know, I know firsthand and secondhand.

Hopefully your wife can find a way to merge the two and move forward with renewed strength and resolve.

By the way: take care of yourself too. To be a good caregiver, you must take good care of the giver! Make time for yourself, if you do not already.

I wish your wife and her family the best in this continuing struggle.

Hope and Humor!

Take care,

Joe

Hondo's picture
Hondo
Posts: 5648
Joined: Apr 2009

You know that I am there with you both in thought and prayers and will continue to be there for you. Joe makes a good point, celebrate each and everyday and don’t worry about tomorrow as tomorrow will take care of its self.

All the best to you and your wife my friend
Hondo

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

... Soccerfreaks pretty well sums it up in a nutshell.
I would only add that I was heartened to read that your dearest has "a healthy resilient spirit." I'm firmly convinced that my positive and optimistic frame of mind going into treatment helped me endure it as well as I did. That, and an abiding faith in God.
Do know that we're here for you and yours.

--Jim in Delaware

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I pray for your wife and your family every day. It was a difficult decision whether to take the chance with radiation having FA. I agonized over it for a long time and got three opinions but it's so hard to get the info you need with such a rare genetic illness that is not known by most docs. You know I'm here whenever you need support.

Hugs and blessings,

sweet

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

I would hate to face any cancer alone and admire those who have traveled that path. You are a source of strength for your wife as evidenced by your posting on this forumn. Don't ever forget the power of simple human touch that you provide. As you continue to research treatment options please look forward instead of back as many of these modalities continue to improve. I believe IMRT is now "old hat". Perhaps the delay in RT had some merit????? I sometimes think caregivers have it the worst. keep posting.

Clearblue
Posts: 188
Joined: Apr 2010

Hi there

Soccerfreaks: "but I would ask her this: after all that you have been through, are you willing to give in now?" by giving in, do you mean saying no to Rad T.?

Sometimes i get back from the hospital and i fantasize having a big party to celbrate how xtra-ordinaily lucky i feel to have her as my wife. But though i can hold onto the opinion that i am a rich for this reason, i just dont succeed in maintaing the "celebrate each day" attitude.

SweetB: You are a Rock. Though my wife hasnt contacted u directly, u should know that we often refer to you and so does she, as we did today at the hospital. She asked if you had surgery to remove scc from base of tonge or did u only do RADS? One of the fears we have is that if she goes into RADs, she goes into it with a mess of a throat - 5 surgeries later adn its impossible for her to eat now without coughing anyway, because of the partial larengectomies.As for the lumbectomy..... . As she only has one vocal chord, I doubt shell have a voice left after RAds. As for her skin, which is quite thisn amanyway and which has had more thatn it can tolerate from Erbitux..... Who knows?
The thought of seeing her suffer the way some of you have is almot unbearable.

She's now recovering from removal of scc from neck. We saw it 7 weeks ago, adn the enco said "it was nothing, just a fibroma, common after surgery phenom." It was only after we had a check up later, that she decided to have a needle biopsy, which came back positive. I cannot tell you all how much she berated herself for not doing it immediately. As for the Onco's rather arrogant sense of self confidence.....well let's move on.

The procedure went well, and shes recovering . Im slowly learning that it doesnt matter what the surgeons see. Its what they dont see that matters. Well be having an MRI soon, i assume because the C beast hasnt given enough between time.

Before the opp i told her that i think of her 1000 times /second. She replied that "its a pity i thought about that when i could be thinking about more important things like: what curtains we should put up in the house!"

I tend to run around this discussion site like a chicken without a head(apologies to vegatarians), adn thats why ive been off it for a while. Its obviouse i need someone to handle all info for me so that my ADD brain can have space to breathe.Ok now back to earth.... .

My wife would have me on the chopping block if she new i was referred to as a carer.
She once told me to Love her, not Care for her! I think that ties in somewhere with the curtain bit.

Thanks Hondo Delnative & Rat for responding. Hondo you know how much i appreciate your manner and Delnative though we have had no direct sharing, your human reponse post when following Chefdaddys breakthru in hospital, facilitated by Hondo, stuck in my mind.
There are others on this site to whom i feel that i should thank for giving me time in the past; kimba, noelsmom, scam and others ,

YOURS
Clear.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Let me make this crystal clear: your wife has gone thru way worse than anything I have endured. She has been fighting that beast longer and more times than I have. When I hear of FA patients like your wife or others that I have read, it frankly scares me half to death. I cannot help but wonder if those things lay in my future.

And, I am not a rock by the way. I am a quivering lump of jelly with a candy coated crunchy shell. The shell is not particularly hard either. I know and I respect that your wife is very private, but if she ever should feel like she would like to contact me, please do not hesitate.

I didn't have base of tongue. I did have a biopsy under my tongue in June of 'o8. I found my lump on my neck in October of 'o8. Just thought it was a swollen lymph node. By December it was the size of a large lemon. I had a fine needle biopsy which showed SCC. I then had a modified neck dissection in January 'o9. Unknown primary.

She is always in my prayers, and you too, Clearblue.

Hugs.

Sweets

Clearblue
Posts: 188
Joined: Apr 2010

your post: "it frankly scares me half to death. I cannot help but wonder if those things lay in my future. And, I am not a rock by the way. I am a quivering lump of jelly with a candy coated crunchy shell. The shell is not particularly hard either."

BY THE WAY, Thats what i meant. , You are a rock.

Hondo's picture
Hondo
Posts: 5648
Joined: Apr 2009

My Wife has been my Rock, she does not know where she gets the strength from, but when I need her the most she is right there. You my friend are no different you are the Rock your Wife needs and you will continue to be there for her, good or bad. Maybe it is just something that God puts in us, to be there for each other when we need it the most.

Take care my friend, my prayers and my thought are with you both everyday.
Hondo

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

"Doing everything possible to avoid RT." Why? Thoughts that went into our treatment decision...

* Surgery isn't guaranteed unless the primary is so well encapsulated that you know it's not anywhere else.
* PET & CT only pick up masses about 5cm or larger. Smaller clumps of malignant cells could be missed with surgery.
* RT is a broader approach to making sure bad cells in the area are killed. Chemo is even broader as it's an entire-body drug.
* RT is once in your life (in that area). I was afraid I would have no backup. But guess what, there is surgery and chemo in reserve for the future in case... (BUT I WON'T NEED IT BECAUSE IT'S NEVER COMING BACK!)
* Surgery for me would have meant almost certain lifelong dysphnonic. My voice would have been permanently ruined.
* My RT experience is different than Joe's, which is different than Susan's, which is different than potentially your wife's. I was told the "RT horror stories". Told them a lot. "He can never eat again." "Her teeth fell out." And I would ask, "how old are they? Are they a smoker? Where is the cancer?" and all sorts of quetsions and you know what - they weren't me.

So you want a happier RT story? Read my Caring Bridge journal of a laryngeal SCC S2/M0/N0 survivor. 35 treatments of IMRT to the neck. You want to know something? It was bad, but not horrible or unbearable. I didn't need a PEG feeding tube and I never went on a liquid diet. I missed a grand total of 1 day of work. Yes! I worked through my entire treatment period. I took my pain meds. I put on the Radi-Gel and Aquaphor. I slept when I was tired. I SURVIVED IT. And how am I today?

No pain, can eat/drink anything I want, neck skin is all better - in fact, I no longer have to shave. Whiskers are fried off! Voice is still only 60% but will get better. Energy at about 80%. Some days I have some slight dry mouth, but no big deal.

So my point is don't take anyone else's experience as what it will be for your wife. We're all different and handle it differently.

http://www.caringbridge.org/visit/dougbernstein

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

For Fanconi Anemia people Chemo and Radiation can be deadly. I just read up on it on the FA.org site and it says they do not handle it well. That is why it is such a dilemma, it could potentially end her life not lengthen it.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Yes, Doug. Chemo is deadly for an FA patient. Radiation odds for us to live thru, suck. To be blunt. Sorry. I was told by a doctor who is one of the lead docs in radiating FA patients that only 30% make it thru. He had told me that the last FA patient that he radiated died of a simple fungal infection. Scared the crap out of me. It was an agonizing decision for me, as I am sure it is for Clear's wife. Cancer in an other wise healthy person is bad enough. Cancer in a Fanconi body is worse. We have birth defects, compromised immune systems, bone marrow complications, the list goes on. I've not found a person yet with FA that lived past 45. I'm 43. So, yes, it tears you to pieces when you get an FA diagnosis and then a cancer diagnosis on top of that. My brother died just shy of his 21st birthday. He had FA but he ended up with bone marrow failure and didn't make it thru his transplant.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Fanconi anemia (FA) is a genetic disease with an incidence of 1 per 350,000 births, and a higher frequency in Ashkenazi Jews and Afrikaners in South Africa.[1]

FA is the result of a genetic defect in a cluster of proteins responsible for DNA repair. As a result, 20% or more of FA patients develop cancer, most often acute myelogenous leukemia, and 90% develop bone marrow failure (the inability to produce blood cells) by age 40. About 60-75% of FA patients have congenital defects, commonly short stature, abnormalities of the skin, arms, head, eyes, kidneys, and ears, and developmental disabilities. Median age of death was 30 years in 2000.[2]

Treatment with androgens and hematopoietic (blood cell) growth factors can help bone marrow failure temporarily, but the long-term treatment is bone marrow transplant if a donor is available.[2]

Because of the genetic defect in DNA repair, cells from people with FA are sensitive to drugs that treat cancer by DNA cross-linking, such as mitomycin C.

Many patients eventually develop acute myelogenous leukemia (AML). Older patients are extremely likely to develop head and neck, esophageal, gastrointestinal, vulvar and anal cancers.[9] Patients who have had a successful bone marrow transplant and, thus, are cured of the blood problem associated with FA still must have regular examinations to watch for signs of cancer. Many patients do not reach adulthood.

The overarching medical challenge that Fanconi patients face is a failure of their bone marrow to produce blood cells. In addition, Fanconi patients normally are born with a variety of birth defects. For instance, 90% of the Ashkenazi children born with Fanconi's have no thumbs. A good number of Fanconi patients have kidney problems, trouble with their eyes, developmental retardation and other serious defects, such as microcephaly (small head).[citation needed]

Just a bit of Fanconi Anemia info. I'm not trying to be annoying or anything. Just want to have a bit of understanding as to why this is is a slippery slope to tread when you have cancer and FA. Each one in itself is horrible and together, well it just stinks. :)

Clearblue
Posts: 188
Joined: Apr 2010

Doug, your story is just amazing.

FAs dont tolerate Chemo.

AS for Rads. We are told that out of 9, 4 never made it through the Rads itslelf. Others suffered severe effects.

I apreciate you sharing "thoughts that went into your Rad decision. THe big difference here is that for you "RT is once in your life (in that area). I was afraid I would have no backup. But guess what, there is surgery and chemo in reserve for the future in case..." .
For Fanconi, unless you play guini pig and prove differently. Choosing Rad COULD BE CHOOSING TO END LIFE. NOT CHOOSING RAD IS LIKE CHOOSING TO END LIFE TOO.

Every doctor we have communicated says more or less the same thing: "Our experience of RT has been severe. Great care should be taken when considering RT. We wish you luck in your decision."

YOU'RE RIGHT . Everyones right. Thats the problem.
Clear.

rozaroo
Posts: 667
Joined: Apr 2010

Clear I am so sorry that your wife has had to go through so much. Also Sweet I appreciate your post explaining what Franco Anemia actually is. It helps me to understand what you
must go through & why! It makes me sad to read your post's about all of the added variables
that are thrown at you. You are amazing people!

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Thank you, Roz.

You know, Clear, that is exactly what I always feel like. A big gineau pig, and I dont like it. :( I know it's not just me that sees that because my step mom became unglued when my RO kept pushing chemo. Even after I informed him of the facts. I also gave him another RO's cell phone number who has treated several FA patients and is one of the most knowledgable people on the subject. My RO did not contact him. That really did not sit well with me.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Sweet,

Did you say 101? The barrier has been shattered!!! And your new pic looks great, uh excuse me, YOU look great!

Best,
Steve

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Yep, 101. Been a struggle to get here and maintain it. I really have to force myself to eat. Last week the scale at the hospital said 104. If I slack off and dont eat enough I will lose up to a pound a day.

Thanks on the picture. Thats me at the Pennsylvania Renaissance Faire. Was a few days after I was de-pegged. :)

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

Glossed right over the Fanconi part and ran off at the mouth without knowing all the data... Wow! Doesn't THAT make me the hypocrite! Sorry about that. My big-time bad. Ignore my b.s. and I'll go crawl back under my rock now.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Oh. Please don't feel that way. I sort of figured that was the case, that you didn't realize there was Fanconis involved or that you probably had no clue what it even was, since most doctors I've come across don't even have a clue.

Come out from under the rock and play. :) Joe says you can ride his pogo stick.

Clearblue
Posts: 188
Joined: Apr 2010

Doug your comments re PET - Surgery are interesting though. Most FA that i know of , who have malignancies, have multiple surgeries because of the nature of FA. the problem is when things become metasticized. There is one person, John Hanna, whom i believe is the oldest surviving person with FA.

Two years ago, my wife has an aesphogectomy, the teams at Michigan , Anne Arbor, all advised against RT and advised to reconsider with recurrence only .She's lost two sibblings to the disease.

On Thursday we go back to the "Ocnco-ENT bringers of orrible news" to "discuss" the suggested path ahead. For some reason, she has almost lost her voice after the last surgery. THey didnt go near her trachea so the only explanation is that it might be from the gerneral anaesthetic. Hope to Gd its nothing sinister.

S.Blood; after the 2008 gastric pull up, my wife dropped about 11 pounds, and though she has maintained her weight at about 96 pounds, shes never been able to put on weight really.

Squamus is stubborn and for everyone here, i pray that we all stick around long enough till they find a targeted treatment that directly attacks scc.

Trying to live the day. Easier said than done.
Clear

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