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Update on Jason....

gizzyluv's picture
gizzyluv
Posts: 144
Joined: Feb 2013

Hey everyone! Sorry I've been slacking on my updates on Jason, but I've been having some issues myself. NOTHING like what he & most of you all are going through, but pretty sucky for me. I have a torn rotator cuff in BOTH shoulders, no it couldn't possibly have been just one, had to be both. lol So, even typing gets painful at times. Anyway, to update you all on Jason. He had another CT Scan Tuesday & got the results yesterday when he went for his chemo. The tumors are shrinking, slowly but surely, & NO NEW ONES! Thank GOD, no new ones. His oncologist did 'mention' sending Jason to Vanderbilt in Nashville to possibly partake in a clinical trial, but the way I see it, if the chemo regimen he's on now is shrinking the tumors would it really be wise to go off of that to try something that may or may not work? That's just me, what do you all think? Another question I have is, how long can someone stay on, lets say Avastin, Irinotecan, & 5 FU? I mean I'm sure there is a point to where the body can no longer take it, right? For the ones of you who have been on Avastin & Irinotecan, did it work slowly at shrinking your tumors or did it work fast? Also, someone mentioned to me "Vectabix"?.....Has anyone here used this or do you know anything about it? The person who told me was dx w/ Stage 4 colon cancer w/ mets to the liver. He said he had one met to the liver that started out at 22.5 mm & then shrunk down to less than 5mm after the first few treatments, then after the next 7 treatments he has been deemed cancer free. The tumor is gone & he has no cancer cells that can be detected. Thank you all for your help in advance! Take care & God Bless, Kris

LivinginNH's picture
LivinginNH
Posts: 1403
Joined: Apr 2010

Hi Kris,

Sorry to hear about your shoulder pain, that's not fun.  In answer your Avastin question...both of Rick's oncs told us that it may work up to a year. but of course it didn't work at all for him.  :(. 

As for Vectibix, you need to be Kras wild type.

Vectibix® is not indicated for the treatment of patients with KRAS mutation-positive mCRC or for whom KRAS mCRC status is unknown. Retrospective subset analyses of metastatic colorectal cancer trials have not shown a treatment benefit for Vectibix® in patients whose tumors had KRASmutations in codon 12 or 13. Vectibix® in combination with oxaliplatin-based chemotherapy is not indicated for the treatment of patients with RAS (KRAS or NRAS) mutation-positive mCRC or for whom RAS status is unknown.

Wishing you both well,

Cyn

thxmiker's picture
thxmiker
Posts: 1283
Joined: Oct 2010

We are very hapy or Jason's great news!   Kepp up the good fight Jason!

 

Keep strpng Kris!  We are sending our thoughts and prayers that both of you find your great health again!

 

 

Best Always,  mike

janderson1964
Posts: 2017
Joined: Oct 2011

I am sorry about your pain but Jasons good news has got to ease that pain a little or at least your mental pain.

hippiechicks's picture
hippiechicks
Posts: 442
Joined: Sep 2012

Awww... hope your shoulder pain improves!! What are they doing to for you?  Do you need surgery??

I have been wondering how Jason has been doing and that is just wonderful news!  He has been through so much!  How is he feeling on the regiment he is on right now?  How is his QOL?  Is he up and about most of the time? What is the clinical trial they are talking about with him?  Is it one where he can get 12 rounds of this under his belt and then see how things are and then begin?  (I think 12 rounds or 6 months is the usual dose unless they are talking chemo for life).  Some of these trials seem very promising, but I can not remember where exactly Jason is right now with active disease and QOL .. that would make the difference IMO.

My best to you and Jason! Sending continued strength. Cool

gizzyluv's picture
gizzyluv
Posts: 144
Joined: Feb 2013

He is doing very well. He is up & doing basically everything he was doing before his diagnosis. The chemo makes him tired, & he has the neuropathy in his feet, but really no bad side effects. (no nausea, etc.) He has gained almost all the weight back that he had lost & is holding steady at 186 lbs. (he's about 5'10, so I think that's about where he needs to be?.....) I think his lowest weight was 169 lbs. His biggest problem is he isn't very patient.....I mean he wants this stuff out of him like YESTERDAY! I know, from what I've read, that he is probably looking at treatment for the rest of his life. As for the KRAS gene, he was tested & it was negative. His doctor said that was good because it meant that he had many more treatment options this way. As of right now he has chemo scheduled through the first week of December. (he was diagonosed on 1/29/13, but didn't start chemo until March because of his surgery, which turned out to be exploratory instead of colon resection, due to the enormous size of the tumor). As for the clinical trials, the doctor didn't go into any specifics, he just asked Jason if he might want to consider going to Vanderbilt. Jason asked me what I thought & my response was if what he's on now is working, would it be wise to stop the treatment & try something that may or may not work?....So, the doctor just left it like that & said Jason & I could talk about it & then let him know. So, that's where things stand now. I'm so stressed over it all, Jason is more or less leaving the decision up to ME, which is tearing me up inside. I don't know what to do. If I KNEW that going to Vanderbilt would help him, we would leave now, but knowing that in order for him to be treated there means he would have to stop the treatment he is on now (that is working, slowly but surely) only to possibly have the new treatment fail.....what does a person do in a case like this? It's not like we're gambling on a horse race, you know? It's his LIFE. I'm sorry to rant on & on, but I can't (or don't) talk to Jason about it, so I thank everyone on this board who has responded & who continues to pray for us. As for me, I've had people ask if I need surgery on my shoulders, the answer is yes, I do, but with no insurance & with everything that is going on with Jason that just isn't an option for me right now. As long as I don't move my arms the wrong way I'm ok, but thank you all for caring! I have faith that the right thing will be done for Jason, whether it's staying here or going to Vanderbilt. I saw a cute thing on Facebook the other day....it said something like "I know God won't give me more than I can handle, I just wish he didn't trust me so much".....that is SO very true. Thank you all again for caring & please continue to keep Jason (& me) in your prayers! ((((HUGS)))) to you all! Kris

hippiechicks's picture
hippiechicks
Posts: 442
Joined: Sep 2012

This is a really big decision.  I wish we had definitive answers.  I was faced with the same question when I was first diagnosed.  The hospital I went to asked if I wanted to be in a study that gave less Folfox than typical to see if it was still effective.  I opted not to do that because of my age and the uncertainty. As it turned out, I recurred within a few months of finishing all 12 so it would not have done me ANY good to have done less!  But, there of course was no knowing the outcomes at the time.  I suppose what I am getting at is that you would need to weigh out Jason's individual options.  I would certainly find out more information on what this study is about. 

Some questions I would ask would be:

Would it matter if you were to just wait, finish up the treatment plan through Dec. and then go explore trials?   (Unless he has one in mind that he knows is closing right away.)  Seeings how Jason is doing well and feeling well. 

Is the treatment Jason is currently doing going to STOP him from being in the trial or vise versa.  If he does "said" trial will it make it impossible to continue or go back on the current chemo that IS working somewhat and he feels fairly good on? 

Does this particular trial also involve some sort of chemo that is known to work?

 

Also, I would do some research myself on the trials that are going on near you with more than one facility and choose the one that is most appealing to you and offers the best QOL for Jason.  (but, again, making sure this does not DISQUALIFY Jason from future treatments known to work if trial fails)  

I suppose I would probably check to see what that facility had to offer for trials at this time and go from there.  Here is a link to the current trials.  I believe there is a way to put the facility in and it will pull up exactly what is being offered there and you can read the criteria and if Jason even fits into them.

 

http://clinicaltrials.gov/show/NCT01040000

 

As for your shoulders .. maybe with the new health laws going into effect you can soon get some relief?  I wish you both the best .. and hope this was of some help to you!  BTW .. that is a really cute saying you saw on FB!! Cool

 

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Irinotecan has no long-term cumulative side effects like oxalaplatin, so you can take it for a long time (years as long as it still works). I have been on avastin for over a year, so you can take it basically for as long as it works or until you have side effects. Same goes for 5 fu. The biggest problem is that in most cases, the drugs lose efficacy within a year or less, and that is why you have to switch. Thanks for the update and congrats on the good news. 

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