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Hope found!!

Posts: 155
Joined: Feb 2013

Mayo results:
1. Told no evidence of cancer in spine. No lesion seen, probably old fracture at L1 with arthritis. Did light up on pet, but MRI confirmed no lesion there. It can turn into cancer, but right now NED there.
2. Echo and EKG is fine to start Herceptin-woo hoo!!
3. Starting Folfox, feels it has been proven to work, more evidence with colon cancer, but feel it will work. DCF was suggested by our other onc, but mayo felt to harsh on heart especially with herceptin. They did warn us specifically about nueropathy so a little nervous about that. All in all I read the side effects are alot less than with DCF. He said he would rather try a lighter coctail 1st , feels very confident it will do the job. He said if it doesnt we still have other options. He said why start out with a more intense when this one could work. I agree!!
4. Schedule is 2 Weeks on and 2 Weeks off, Tues-Thur. Pump on 3 days, dad was happy about that.
All in all I just feel so much better, so does dad. He said the chemo will be at least 6 months if no complications. He said he didnt understand why he tested her2+ this time and not last. My opinion the 1st time was done at my request and the specimen sat too long in formalin before done. PLEASE request that your loved one gets tested when tumor is removed, so it doesnt sit on the shelf for Weeks, formalin will affect the results. I was so impressed with the doctor and staff. The warmth we feel from them is so comforting. They had ordered so many tests following the consult and they did them all,same day, called same day at 5, couldnt believe it. He said he cant predict time, never does,he said he would have to have 100 patients exactly the same to do so, never happens. He told dad to forget the 4-8 for sure. He also went into mind and spirit importance to survive, so he set dad up for the pallative care at mayo to help with that. He really believes in this, so do I. I could go on and on about the great experience, but there was nothing more rewardind than to see Dad struggle to stand up to shake is hand and say "Thank you for giving me my life back today, I died on the inside a few Weeks back when I was told time is coming up." The doctor replied, "Jeff you will have plenty to make memories, your going to be that patient I tell future fighters about. I hug so please sit back down so you dont fall", and he leaned over and hugged him and winked at me. This is our guy for sure!!! Dad starts treatment this Tuesday, praying for an easier journey, the least amoint of side affects, and strength to pull him through. Thanks to everyone for your support and prayers.
*Lynn, I did ask about the NP thing and he said dad will see his fellow whos an MD every week during treatment, and him twice a month from here on out. He assured me that if there is any side affect or complication he will be seeing dad. The NP is there for same day emergencies and triage of phone calls. He said that he is there everday if it is something the NP would need to consult him. He said it is that way because he wouldnt be able to see all patients and new ones in a timely manner.Fingers crossed...nothing like that will happen. Regarding port problems the NP triages, but radiology removes and inserts. ???why different at your mayo.

Posts: 91
Joined: Mar 2011

Wish you all the best. My husband is on Folfox and Herceptin and tolerating it very well. On the whole he feels good. his oncologist was also concerned about neuropathy because last year claude had six cycles of cisplatin 5 Fu, then Xeloda and while on the Xeloda started having problems with neuropathy.

now after six cycles of folfox he says he feels almost nothing.

as i mentioned in several posts claude's oncologist was very hopeful about the Herceptin and a couple of people i've had exchanges with about  treatment  with herceptin have had good results.

please give my best to your Dad and all the best to you too.


Posts: 99
Joined: Dec 2012

Glad you found someone you feel comfortable with. That is half the battle. What did Lynn say about NP?  Would you mind sharing who your doctor is?

Deathorglory's picture
Posts: 205
Joined: Jul 2013
I had similar treatment with great success.  12 rounds of folfox/24 rounds of herceptin over 24 weeks.  I've continued on the weekly herceptin for 15 months since the folfox ended.  At the start, I was given absolutely no reason for optimism, and was told I could expect a life expectancy of only a few months.  I'm currently NED (not likely to last forever, but we'll take what we can get), and I wish similar success to you in your fight.  Best wishes as you go forward.
Posts: 155
Joined: Feb 2013

Thank you for the encouraging words and wisdom.  I can't tell you how much better I feel, at least for now. I'm overwhelmed with hope, knowing he can try this Herceptin.  Fingers crossed.... He starts everything on Tuesday, so we are a little nervous about the usual, but we'll manage. Nothing is worse than waiting on scan results!! I hope each of you or loved ones is doing alright, it's been so hectic with all these appointments to get clearence for chemo, haven't been able to keep up with post's. Have a great weekend, praying for you all, always :)

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