Topic: Newbie with Some Good News

Hi my name is Kendra.  My boyfriend, Donny who is 30 years old, was just diagnosed with CC a week ago today.  We have known he has cancer for less than a month, but it took getting the run around and finally going to Cancer Treatment Centers of America to get us the answers, and him the help he needs.  Donny received his first chemo treatment last Friday.  Everything has happened so quickly, and as you all know, watching his health decline so rabidly is shocking.

I have read plenty of stories, and facts and information of this horrible cancer to be terrified of what's in store.  That being said, I have some good news too, that I hope will inspire you all to keep your spirits up and pray for good news in the future for yourselves and your loved ones.  Donny saw an Occupational Therapist who informed him that it is extremely important to keep his strength up to succeed in beating the cancer as well as the side effects from chemo.  She explained how every time he receives chemo, he will get knocked down again, and needs to exercise and keep his mental health in good standing while going through this.  The day after he saw the OT, he met with a Physical Therapist (Wednesday of last week).  (Donny had been in a wheel chair for a week at this point due to the pain in his liver).  By the end of his hour long session, he not only had a great work out using a machine that was like a bike and an elliptical smushed together, he also left his session using a walker.  We all got to come home on Saturday, and every morning since, Donny wakes up and does the exercises his PT gave him.  He barely used his walker on Monday, and he didn't use his walker once yesterday!  He is standing straight up, and able to lay flat on his back, which is a huge change in him.  I do not believe this is purely from the medication and the chemo.  I believe it is coming from his determination to get strong and beat this thing.  Please remember determination is everything.

I'm still scared and afraid to get my hopes up, but I do my best to keep good energy when I'm with him, and find that I fall apart when I'm alone.  I don't know if anyone else has experience such a drastic good change as I am seeing in Donny, but I'm praying that this is something good, and there isn't a huge decline coming (other than what is expected with chemo).  I'm happy to have found all of you for support, understanding, questions and answers.  I'm also so sorry that we are all being affected by CC one way or another.   -Kendra

Re: Newbie with Some Good News

Hi Kendra,

Welcome to the CC family; sorry to hear about your boyfriend but I hope he gets the help he needs.  Sounds like he's headed in the right direction.  Just hang in there and stay strong for him because attitude does play a very important role in fighting this disease.  Sending lots of hugs and well wishes your way,  PeggyP

Re: Newbie with Some Good News

Dear Kendra, welcome to our remarkable family but sorry you had to find us. I do believe what you are saying abou the Physical Therapy as we have a couple of members who have been running Marathons and do extraodinary things and they are very much in to running and exercise. Along with this, attitude is everything. It is scary in the beginning but for us Caretakers we really need to be very strong as it not only gets us through but the patient as well. I wish Dony continued success and please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Newbie with Some Good News

Kendra.....a warm welcome from me also. I don't have much to add to what has been said already only that exercise, even walking while undergoing chemo has been recommended.  I wish for continued success.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Newbie with Some Good News

Thank you everyone for your kind words and well wishes!  It's really great to hear about people running marathons.  He is already talking about doing every single cancer run he can find.  (Guess I better get in shape).  Donny arrived in Arizona last night for another round of chemo.  I really wish I could be with him, but as he says someone has to make some $$ around here.  Thank God he has his mother, that can go with him.  I'm a little nervous about this one, as my co worker told me that the first round isn't that bad, but the second is when they start to feel the effects of the chemo.  Has anyone else found this to be true?  Either way, I'm going to make sure this boy keeps his spirits up and keeps moving :-)

-Kendra

Re: Newbie with Some Good News

Hi Kendra-

I have limmited experience, but we found with my mom's chemo, it was the cumulative amount after teh 2nd round that had more side effects, but oddly not immediatly after- (that was maybe due to steriods she took for teh 3 days immediatly following) Her pattern was feeling the worst about 4-6-7 days after the 2nd round. (She is 89!) But i think everyone is different and you have to be patient to see what pattern he has (if any)
Staying active is good- even at 89 my mom was more active than most 55 year olds! Always getting up and dressed and out of bed EVERYDAY.
On the flip side, she often was scolded by her dr's that she did need to rest a little when the chemo fatigue was bad. So her answer to that was take a 2 minute nap ;-)
Also, (and i think i need a disclaimer here: this is just info i have read, i have no idea if it is actually true or works and of course consult with your Dr first!!) We looked into a lot of different things and i read that some medicinal mushrooms (Maitake, Shitake- which you can get at grocery) and Reishi have some good effects on this type of cancer- actually my moms onc told us that the first visit. AND they have some anti chemo side effect, effects- if that makes any sense.

Thinking of you and yours, and Be Brave!

7 (edited by Maria Sat, 23 Jun 2012 03:43:27)

Re: Newbie with Some Good News

Hi Kendra!!
So happy to hear your Donny got some good advice!
What I´ve learnt during my cancerjourney is that keeping your strength is CRUCIAL beating cancer!!

I got my diagnosis April 2010, and the message was to get my affairs in order. I was 43 and in very good shape. I continued my running, and pretty rough training 5-6 days a week. I added yoga, and I only eat very healthy.
Did you read the book Anticancer by David Servan-Schreiber? It´s all there.

So instead of being 6 ft under a year later I run a halfmarathon (Gothenburg) in 2.04.
This 2nd of June I completed my 3rd Stockholm Marathon in 4.27.
I´m on chemo again after a 6 months break, and my doctor now tells me I have to go on with my running etc, as he´s sure this is why I´m still here, and still healthy!!

I work, I run and I live an almost normal life. Two years ago I had a tumor as big as my fist, and 10-15 smaller ones in my liver. Some are still there, but their days are counted!

Can I count on you guys for Stockholm Marathon in June 2013 wink ??

Impossible is nothing! (stolen from Adidas... smile  )

Maria

No matter whether you think that you can, or that you can´t, you´re right
//Henry Ford

Re: Newbie with Some Good News

Maria,

I love your spirit and zest for life so much!! Keep it up, girl.

Love and hugs,

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Newbie with Some Good News

Go Maria, Go! Go, Maria, Go! Oh what a fantastic dream that would be, to all be able to come watch your Marathon in 2013! Like the Ever Ready Rabbit that keeps on going, you ARE our Marathon that keeps on runnung!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.