New Path report--, my cancer is back again, at Primary site.
Comments
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Crystal,
I'm up to date now. I am surprised they are offering you the option of radiation when you have had it before. I thought you had radiation to that same area, or close to it before. (I would have to read your story again on your profile page) You have gone through so much, it's not fair.
With me after 7000 (max) in 35 days, It would be surgery next. I know there have been a couple of people that have gotten radiation twice to an area. I just don't recall I they had the max the first time.
-Steph
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Russ, I have been on Potassium since they found it was low and could not put me under to have my biopsy. I wasn't given the liquid. I'm given pills. Klor-Kon. It's dangerous to put people under with low Potassium. My doctor is not fond of the liquid. However, the pills are huge. You have to be able to get them down. It helped me tremendously. It's really important for her to get her Potassium back up. Potassium is nothing to play around with. I am not surprised Crystal has low Potassium after knowing her weight is so low.
Another issue is food manufacturers were not legally made to include the amount of potassium in foods. Crystal, I don't know what your liquid diet entails, but if you can you maybe want to throw a banana in a smoothie.
I really do want you to know I care about you, and you are going to a good hospital. I just hope your doctors are doing the best they can for you.
-Steph
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Crystal,
I find myself hoping that something like recent immunotherapy break-throughs will be the treatment that works for you!
As always, you're an inspiration to every one of us! We're all with you, way up until you win this fight!
Curt
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Hello Curt, Stephanie, Suez39, and All.
How I wish I had good news from today in seeing my Medical Oncologist in clinic, but I do not..
She told me that the Radiation Re treatment will give me just a few weeks more, at most I might have a few months. I'm Stage IV terminal now.
Since last week, I have completely lost my ability to Speak, and my swallow is gone. When I try to swallow, the liquid comes pouring out of my nose. They have told me to Stop swallowing and instead to tube everything which I started doing days before, over the weekend. I knew instinctively what I had to do.
My surgeon told my Medical Oncologist this morning that this New Primary cancer is much too large and extensive for any surgery. It begins in my Soft Palate ( involves that whole structure) and goes down the side of my throat to include the epiglottis, hypopharynx, and upper voice box, right now. Its why cannot produce Speech now.
My weight today clothed was 68.5 pounds. At home, I'm 66- 67 .
She said, again, No to Immunotherapy. She said the Risk of Death to me, from the treatment is much too high. Also, my Lymphocyte counts are so Low, that its highly unlikely to even work ( AND, she said its effective in only about 40% of HNSCC patients. I already knew that fact)
She was emotional several times and apologized, saying she wished she had something to offer which could halt the progression
Keep in mind, I have no way to Speak right now and as always No One went with me, for this planning appointment.
Anyway its time for me to begin getting my affairs in order, soon.
Here's a big question though which I may need to put as a separate post::: Does anyone have any experience with ERBITUX? Its used in Colon cancer and in HNSCC as well.
It has some nasty side effects. She offered it to me today, and if I give the go ahead, I would start next week with the loading dose infusion in the hospital.
Again, she said #1. If I tolerate it #2if it even works against this aggressive cancer that it Might give me " a few more weeks". Maybe.
Well, question is do I want to spend my last Weeks, Months, in treatments Sick, just as my Randal did before he died..??
I just don't know.
Sorry to lay this on you guys, but having tis cancer combined with my Primary ( genetic) immunodeficiency, is a recipe to allow my invasive SCC to go where utwsnts, do what it wants and my immune system completely ignores it. There isn't enough immune system to take care of my Infections ( right now, Lungs and sinuses ) much less of cancer.
Crystal
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Crystal, I am so VERY SORRY that this has happened to you. My heart goes out to you, and I'm at a loss for words.
I feel so bad you did nit have anybody to go with you to your appointment. They could of given you some emotional support, which you need.
I never took that medicine you mentioned. But just think twice before you make your final decision. You have been through so much, and as always I am here for you. I can barely whisper, so I know how hard it is not to be able to communicate. Please if you need to chat, or need something, I won't hesitate to help anyway I can.
Big hugs,
Susan
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Crystal,
I was so saddened to read your email, and then this - it absolutely choked me up!
I don't know anything about the treatments you mention, but we will all be hoping that it slows it down, knocks it out, and gives you some relief.
Please let me know if there's anything I can do to help and feel free to text, if you need to communicate faster than I can on email.
As always, I consider you a truly beautiful woman, and an incredible inspiration; (you may be the single toughest person I know)!
I'm sending as many good thoughts and positive spirit as I can muster... we are ALL behind you!
Curt
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Crystal,
After you shared treatment options, It was so devasting to read your last update. I wish you were not going through this. I also feel so horrible that you are alone through so much of this.
As others here have stated, If you need anything, please don't hesitate to ask.
know that you are in my thoughts, and I am with you in spirit.
-Steph
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Crystal,
Can you keep us updated on where you go? (Of course when you have the strength to do so!) When you are no longer at home? I was like to be able to send you things to at least try to cheer you up.
Are they controlling your pain well enough?
My prayers,
Stephanie
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Well, tomorrow I will be in the Cancer Center all day getting my regular infusion. I have enlisted a driver, just in case I have a day like today, when too sick and weak to drive. We will see.
I'm definitely not doing well.
This tumor is large and I can Feel it in my throat, even with just a dry swallow.
I coughed All Night last night, productive cough. I went through a box of tissues and I think it's the swelling in there doing that, exactly, just exactly as my first large Primary tumor did. Then, I had to Sit Up all night to be able to breathe and sleep. Now, I have my own adjustable hospital bed in my room. But the problem is becoming worse.
Yes, I will keep you guys updated, what's going on.
Tomorrow will be another challenge because in psrt, not being able to speak at all. I cannot produce speech..... So, I will have to write to communicate with people throughout my whole day at the hispital.
I'm tired just think ing about it.
Thank you and I will try to post more as I can.
Crystal
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I wish we could all fly there and be there with you so you are not alone.
Everyone needs a support group!
You should not have to go through this alone.
I have been a wreck all day over this. I can't imagine what goes on in your mind.
Love,
Steph
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I have to make the decusion, of whether or not to go forward with the ERBITUX ( Cetuximab( infusion on Tuesday. They will be giving me the first Loading Dose, and its a 3-5 hour day in thehisoital. ( like tomorrow, but it's a chemo drug)
The side effects are toxic, and are harmful to my already diseased lungs. Numerous side effects, in fact....
However, this tumor is growing in my throat. My mother said she can hear ( even though I can't produce understandable speech( the tumor affecting my breathing and that its Choking me.
Yes, I am going for the High Dose Radiation treatments, first I will have to have anew Mask made.
But see, the Erbitux works together with the Radiation,to begin shrinking the tumor .
Still , how in this world do I withstand the effects of both, with as sick and emaciated as I am now ?? So weak I cannot open scan of soup ..68pounds..
I KNOW, because they have all told me , that this cancer will swiftly kill me, in weeks, even with radiation .
There are times I am right on the edge of wanting to go to the ED for Breathing help....
See, my first tumor I eventually had surgery . Thus time they cannot operate as it's too large now. Its quickly grown to #1 Disable my swallow #2 to invade my larynx Andi cannot producespeechniw.
The cancer is gonna kill me in short order, she told me yesterday . Question is, do I go through with the Erbitux treatments , with all the bad effects some may seriously harm me, and be Sicker to try and buy more time, or do I just do the radiation which will give me " weeks, maybe months" enough time to get my affairs in order?
How do I want to spend my remaining time ? . Either way, either way, I will die from this cancer. Radiation will temporarily knock it back ..
Crystal If I were a normally strong person, I could make the choice. But I have already infected Lungs ( both of then) and immunodeficient ... And I have spent much time being Sick. Well, okay, these infusions are gonna make me sicker than I am now ---- I have to ask myself do I want a tiny bit more time ( because that's all this will afford me)-- just being More sick ??
P
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Crystal,
I’m thinking about you, and I continue to be amazed at your strength and spirit.
I hope you’re asleep - having beautiful dreams!...
Curt
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Crystal, I forgot to mention there is a thread right below this asking about the same drug you were.
No answers yet there.
I will keep an eye on it.
I sure hope you know how much you are loved!!! I've been so sad about what you have been going through. No one deserves this...
-Steph
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I also agree with Stephanie. Nobody does deserve this. You are an inspiration to all of us, and have made such an impact on our will to fight cancer. I can't imagine what you are thinking, and so difficult not to be,able to speak. You should not have to go through this alone. We all need a support from family /friends. You are always in our thoughts and prayers. Love you!
Susan
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Suez,
I would like to echo everything you have said.
@ Crystal has not only been on my mind but a lot of others here. It's not easy for me to imagine Crystal going through this. KNOW in your heart Crystal, you have a TON of us here that care about SO MUCH!! I hope that helps!
I shed tears for you, and I have not been alone in that. I want you to be happy!
-Stephanie
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Thank you Stephanie. That means alot. And Crystal I just feel sick to my stomach what you are going through. Tears well up in my eyes. I hope they are giving you pain medicine. We all wish we lived in your state, so WE could be there in your time of need. I know these are just words, but they come from our HEARTS!
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Hi Crystal Doll, as you can see we are deeply affected by your situation and we hate to see anyone suffer and go through this especially one of our own H&N brothers or sisters. As Suez said these are only words but come from our hearts as we hurt in our own way for a dear friend and that is you my Dear Crystal. We just want you to know how much we Love and Care for you. And as many have said and offered if you need anything that we can do or help with anything you need just make us aware, we are here for ya. Distance separates us but not our hearts.❤️💜
Take Care-God Bless-Russ
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Wow, I can say I'm really moved, and grateful for the genuine concern and caring . and u know its because every one of you has also been through this cancer at least once, and some multiple times like me. That's where the real bonding takes place. It comes from knowing that you, and you and you, have all been there and walked this road, to some degree.
Yes, too bad we all can't get together for a Pajama Party !! At least we can think about it. Plan it?? Assign what everybody will bring ?
Okay, so today I was in the Cancer center hospital All Day, just for my usual once every 28 days, infusion of Immunoglobulin. The brand they give me is called Private and its made by CS Behring.
I had to give this News, in written form ( because I have no distinguishable speech)--- and because this is my 30th YEAR at this hospital ( in November)-- lots of people know me and the word spread like wildfire.
Everyone wanted to help in some way, including my nurse John, who jumped up every time I went to the restroom, to help get that huge heavy pole over the threshhhold, instead of me pulling the pole over onto me.... This was an infusion suite with 4 patient recliners and a shared bethroom. I guess this room was older, because none of the newer rooms even have a threshold .
To compare, my 2 Poles at home are set to my height ( I'm 4'10") and mine are very lightweight. I can lift and carry mine. Not the huge heavy poles and pumps in the hospital. ( inbOctober, I had 3 pumps on one pole, Andi could barely roll that big contraption!!)
Anyway, I had to get a ride today because I am too weak to drive. Then I had to get a Volunteer, who knows me, to carry my too heavy pink & black duffel bag, on the long walk from main hospital to Cancer Center hospital.
My nurse said my Lungs sound very " Junky". Full of " junk", phlegm, infection and fluid...etc. My regular breathing is Noisy and readily heard. My oxygen saturation varies, and the nurses would Stanly there watching my numbers!
We already know that the Carbon Dioxide in my blood is very high.
Well, my admitting doctor today ordered a chest x ray but it was never communicated to me clearly when im to get it?
If its as bad as they think, then that will throw off my treatment schedule next week.
Its late, and I'm tired so I need to get to bed... But again last night, I got maybe 3- 4 hours of sleep because I'm awake coughing and coughing and struggle to breathe, through the tumor now in my throat and all the secretions its creating. Its truly awful. Can get scary too, trying to get my breath.
And I cannot get anything up!! I used to expel it but now there so much swelling in there, or filling up, that its not functioning the way it should. I can barely even Gargle. But I keep trying.
I So want to sleep tonight, hoping I don't cough and struggle all night yet again.
Hey, is there a difference in a Slumber Party, and a Pajama Party ?! Let me know !
Meanwhile, I'm going upstairs to see if I can drift off to drreamland, peacefully hopefully .
Thank you, everyone for the wonderful loving thoughts. It really means a lot !
Crystal
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