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3 and 1/2 weeks after treatment , rons progress

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

hello.

been so busy and havnt had much time to get on here lately but do want all of you know I still pray for you, all of you.

 

first week out of treat ment was hard but then by the mid of second week , ron just started eating no matter what. pain or dryness he ate.

he lost a total of 40 pounds, got by without the peg tube thank god for that.

he has gained energy, able to do things now without shaking. I had to take the spark plugs to the mower to work with me. lol

he now has gotten some saliva back which makes eating a little better.

maintaining weight.

and he was so excited last week cause he could taste his tea! for the first few sips. he was able to taste crust of pizza but nothing else on it.

he tastes salty or sweet. 

so things are going very good in the progress.

we thought it would be months to get where he is now , so we wonder if treatment was strong enough since he is doing so well now.

he is going to go back to work on thursday half days to start. we weill see. he has been doing the driving on our errands and hasnt gotten tired and I know he can drive up to an hour now so I know he will be able to get back to work.

our 6 year old fell and broke his radial bone , had to have it rebroke a week later. then another week later he had to go in for surgery again and have screws put in it.
 they told us they dont know if the screws will hold the splintered fracture and might have to go in and have cage put around the bone, will find out wednesday on that.

most of you know rons aunt died of leukemia last month, she had uterine cancer 14 years ago, uncle is getiing on day by day. only relatives with in 3 states of us so we help each other.

so all in all, we keep going.

ron has to wait till mid november for his scan, it will be just a ct scan, I thought they did pet scans, is this the norm?

T , hope you read this, you just had your scan, was it a pet scan or ct?

god bless you all

janet

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

janet, very happy to hear he is do'n so good.  my 1st scan after trmnt was a PER.  that was 3 months out of trmnt (1/10).  i also had one oct. 2012.  now doc says no more scans of any kind unless theres a problem.  yuk.  i'd rather have the scan and know for sure..lol.

so sorry your 6 yr old has such a serious break.  thats sad.  i hope the pins hold and no more surgery is needed. 

i will b praying for all of you.  let us know how your 6 yr old does.

dj

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

thankyou dj,

what is a PER?

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

sorry, that was supposed to be PET.....LOL

dj

donfoo's picture
donfoo
Posts: 1329
Joined: Dec 2012

Glad to hear Ron is progressing so well. Keep up the good work. As to first scans, it seems most get a PET/CT then CT later. Ask your doc why just CT and you are pretty early yet so it is likely the scan order has not been placed. don

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

great!  Going back to work for part time is the perfect way to do it....get a chance to break into it easy.  I'm sure he got strong enough treatment...everybody is so different, and where they get their rads makes a difference.  He may even see his taste come and go for the first few months, too.....things are good one week, the next week taste takes a hike. 

Ooooo...poor baby....breaking his arm, and then having to keep going in to get it redone.  Hoping that things are good on Weds, and he can heal up with no more medical intervention!

The scans?  Who knows what protocol really is.  I had one PET last Nov.....a CT in March....and due for a CT on Weds.....not only do I not get a PET, but they don't even do it every 3 months (which I think they should!).....I did say something last time....but basically, the Onc told me that a CT every 4 or 5 months is sufficent.  This time tho, I'm going to ask them why they're being so stingy with MY insurance.....criminy....my insurance would have paid for me to go darn near anywhere for treatment, and many of those places do PET scans every 3 months....I might have to raise some hell this time. 

p

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

good luck with your ct phrannie

Ladylacy
Posts: 517
Joined: Apr 2012

Glad to hear your husband is doing so good and sorry to hear the news about your son and aunt.  As far as the scans, I think it depends on the doctors and it could also depend on the type of head and neck cancer.  My husband had PET/CT scans together every 3-4 months the first year after treatment and surgery.  Second round of treatment, it was the same and now that he has declined further treatment, he won't even agree to having a CT scan to see where he stands.

Wishing you and your family the best -- Sharon

fishmanpa's picture
fishmanpa
Posts: 1134
Joined: Jan 2013

Hi Janet,

Life is a soap opera sometimes. Glad to hear Ron is doing well and he really is for 3.5 weeks post! Just don't be surprised if things level out for a while. I know they did with me. Sorry to hear about the not so good stuff :( Hope your son will be alright.

Obvioulsy I read this :)   I had a PET scan. All clear. I won't be getting any more scans, just scoped every three months for the next two years and a yearly chest x-ray. If something looks questionable or I develop and unusual symptoms, they'll do a CAT scan.

Tell Ron to keep up the good work and don't push it at work. He'll tire out a lot faster than he thinks I assure you!

Positive thoughts and prayers

"T"

 

 

 

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

thankyou T, he sees rad dr on wednesday and I will ask again what type they r going to do.

a regular ct wont do it as far as i am concerned. I am going to PUSH the pet scan for november instead of regular ct

 

CivilMatt's picture
CivilMatt
Posts: 3090
Joined: May 2012

Janet,

It sounds like Ron is doing great, progressing along beautifully.

I had PET/CT at 3 & 9 months and a CT at 12 months.  From now on it is feel and scope.   If anything pops up my ENT will order a scan. 

I am on the 5-year trust they got it plan.

Sorry about the little one.

Matt

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Wow it sounds like Ron is doing great ! I hope he continues to improve at this rapid pace . I am so sorry your six year old is having such a rough time . Poor baby !! I hope they don't need to do any further treatment on him. My first scan after tx was a CT ,(NED they said, they didn't look far enough down I think ) but about a month later I found a lump further down on my shoulder on the same side that the other one was on and my ENT ordered a PET right away . I just have a feeling they order CT's because of Ins. and costs now , unless you have a recurrance . I also wonder if PET's subject you to more Radiation ? 

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

peggylulu,

I think a lil more radiation at this point wont matter, and I am nervous so will be pushing the insurance company for that pet , even if

just for peice of mind.

thankyou, I hope my lil one heals without any more surgery, we see the ortho wednesday.

got done with rons pic line in the am and was soooo happy not to have to bag that arm daily, damn, that afternoon lee broke his arm, and here we

go again with the daily bagging the arms again. ugh

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

I am so happy and truly amazed at the wonderful progress Ron is making.  I pray the great progress continues for him.  I am, however, so sorry to hear about your little boy.  It is so hard to see anyone we love in pain, but a child -- that's the absolute hardest thing, for me anyway.

Try to keep us posted.  Good news is always great to hear.

~Shawn~

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

thanks shawn,

nice pix of the dog for the avatar, great dane?

jim and i's picture
jim and i
Posts: 1685
Joined: May 2011

So happy Ron is doing well. Don't understand the no PET. Jim had a PET after three months and then CT after. I would ask doc why. As for not getting enough tx because he is recovering fast, not necessarily so. As they say everyone is different. Some have recovered fully in months. Some like my husband still can't eat 2 years later. Being young also helps with recovering faster. Sorry to hear about your son. I went through similar thing with my son and it is stressful for mom, especially as young as your son is. Praying he doesn't need more surgery. Also praying Ron continues to heal quuckly and all goes well when he returns to work.

Debbie

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

thankyou debbie,

I hope your hubby gets ability to eat rapidly.

as with my lil one, its very hard to be there when they wake up from anestesia crying from pain. done this twice in 7 days, , dont want to do it again.

have 2 adult sons that never broke major bones as kids. thank god.

I have broke all sorts of toes fingers, elbows(thats an ouch) and ribs, but not an arm or leg.

oh, I even broke my butt (as my husband likes to tell) , my sacrum and pelvis. never roller blade with a large dog, squirrels are hazzardous.

janet

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