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Single Digits

sin9775's picture
sin9775
Posts: 198
Joined: May 2013

Hi everyone.  My brother finished his last double digit radiation tx today!  Yay, he is into single digits.  So far he has lost about 35 lbs, has one mouth ulcer, lost the hair in the back of his neck, needs to use his tube and had to spend one day in the hospital because of constipation (not fun), but other than that, I think he is doing well.  He did mention that he has a hyper sense of smell these days, and it can get rather sickening for him, I guess.  That's one that I have never heard of on here before.  The whole bout of constipation and the hospital visit sapped him of all energy, but he is rebounding again now.  Hopefully the next few weeks will be equally as "kind" to him.  I know it could be so much worse!  I am visiting him again in the beginning of August

Can anyone tell me, please, at what point do they know if the treatment "worked"?  He never had surgery.  Will the tumor be gone at the end of 35 rads and his 3 chemos?  Could it be gone now?  At what point do they test for that? 

Thank you for any insight you can give me.

~Shawn~

phrannie51's picture
phrannie51
Posts: 3685
Joined: Mar 2012

getting into the single digits was great for me....I could finally do a daily countdown, and see myself coming to the end of radiation....

What is this?  You've been here since May, and never heard about our bionic noses?  My nose got so good I could rival my German Shepherd in the field....I don't remember it being totally unpleasent, tho.....I did get a lot of deja vu during that time.

I feel for him on the constipation....it can get so bad....a true PITA.   I took Colace....3 of them everyday....to try to avoid it, but it was still bad....I could count on a twice a week, one hour trek in the bathroom....wishing I had a piece of leather to bite down on....

His tumor could be gone by now.....I know I wasn't done with radiation when my ENT could no longer see a tumor.....and the lump in my neck went away within the first 3 weeks of rads.  I still had a lot of treatment to go even then, tho....that would have been in June, and I still was getting chemo treatments till the end of August.  About three months after he finishes treatment they will give him another PET scan, to make sure it is all gone.

p

sin9775's picture
sin9775
Posts: 198
Joined: May 2013

You know, Phrannie, now that you mention it, I do kind of remember some bantering about regarding bionic noses.  I guess it just never registered.  Probably because it is not as distressing as most all of the other symtoms that definitely did register!

Thanks for all the information you always so freely give.

~S~

CivilMatt's picture
CivilMatt
Posts: 2924
Joined: May 2012

Shawn,

 

I can smell a good brother and you are one.  I also had temporary bionic nose, oh the smell of Jevity in the morning.

 

The cancer is on its way out.

 

Stay hydrated, stay happy,

 

Matt

sin9775's picture
sin9775
Posts: 198
Joined: May 2013

What the heck??  I keep getting message saying I can't post or some such thing.  I will try again to respond to Matt.  I was able to respond to other people, but not him.  Here is what I have tried repeatedly to post:

 

Hi Matt.

I was wondering how many good people here thought I was a man.    Nope, I am a sister.  I will accept the compliment regardless.  Thank you. I guess I should really change my Dick Tracy pic, except I can't figure it out.  That pic, by the way, is of a statue that is tucked away along the Riverwalk in Naperville, Il.  Apparently the creator of Dick Tracy lived here.

~S~

 

Hopefully you all will be reading this some time soon.  Here I go, I'm hitting the submit button . . . Stop the presses.  John says I have to remove my smiley face . . . Done . . . here goes . . . Success - yay!!!  Thanks John.

P.S.  I obviously also figured out how to change my picture.  This is my Great Dane, Gibbs checking out a friend's little rat dog.

debbiejeanne's picture
debbiejeanne
Posts: 2384
Joined: Jan 2010

shawn, hitting the single digits is a big deal and something to celebrate!!  it won't b long now and u and ur brother will b ringing that bell!  we look forward 2 seeing the post saying u rang the bell. 

dj

corleone's picture
corleone
Posts: 156
Joined: Jul 2012

I had concurrent radiation and chemo treatment followed by 3 months of chemo for nasopharyngeal carcinoma (no surgery).

I too had hyper sensitive smell. That was a problem, because I could smell the food, but couldn’t taste it. I was also able to detect the ozone-like smell released during the radiation session.

Constipation was a problem, my hemorrhoids got very swollen because of that. This went away once I was able to eat real food.

In my case I knew the treatment was working right away. I had large lymph nodes each side of the cervical (neck) area; the largest was 4.5 cm long on the right side. I was able to palpate it easily. I can tell you that it shrank to half the second day after cisplatin! 3 weeks later, after the second cisplatin session, I was no longer able to feel it. The radiation also must have contributed, but the first dose of cisplatin was administered the 3rd day after radiation started, so the chemo alone did that initial shrinkage. I was amazed, it was acting very fast.

 

sin9775's picture
sin9775
Posts: 198
Joined: May 2013

Corleone,

The truth is, I live in a different state than my brother.  When I last visited him, he was only a week into treatments.  His neck was definitely still swollen when I left him.  I haven't actually asked him about it lately.  It is so hard to understand his low raspy voice over the phone, that I keep my questions to a minimum and the little stinker is not getting on line to communicate with his sibs.  I do know that he is still constantly "clearing" his throat just like he was before any tx started.  This could be from mucus, I suppose, but he hasn't complained about that.  I just don't know.  I guess I'll put my little detective side to work.

I feel very good after reading your reply.  Thanks!

~S~

corleone's picture
corleone
Posts: 156
Joined: Jul 2012

I wasn’t able to speak the last week of radiation treatment and 1 week post. That’s because of the pain, dry mouth, etc. At that time I communicated only in writing and my wife was doing all the talk for me. I guess she regretted those times, once I started speaking again!

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Shawn,

So glad to hear this for you and your brothers sake!  These past few treatments will be over in no time and he can start feeling relief instead of feeling worse before you know it!

As you know, Dad is following close by.  He is almost in the single digits.  He has 11 rads left, and one chemo this upcoming Monday.  I guess he has got sick twice- I wasn't aware of that, but twice is better than all the time.  Dealing with a lot of the same things you mentioned.

Hoping our loved ones get back on track fast!  PRaying for you and your bub!

Cherie 

sin9775's picture
sin9775
Posts: 198
Joined: May 2013

Hi Cheri.  Hitting double digits was a great feeling for me - I can't imagine the joy my brother is feeling.  I know you know exactly how I feel.  It sounds like your dad, and my brother, have both been blessed with the easier side of things - so far.  I know you are praying, as I am, that it continues.  I'm looking forward to hearing about your dad's success as well.

Blessings to you and your dad!

~S~

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Thanks Shawn! I know this its getting down to the nitty gritty! These last few weeks will be rough, but then the sun can start coming out again! Wishing you the best

CivilMatt's picture
CivilMatt
Posts: 2924
Joined: May 2012

Shawn,

I stand corrected, I meant to say brother you’re a good sister.  You see, I have had rads and I am only hitting on 5 cylinders.  Kind of reminds me of the Billie fiasco of 2012, poor Skiffin.

By the way, most of my advice or compliments are interchangeable between the sexes.  Like, John you are looking pretty today.

See you cutie,

Matt

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