Hello. I'm wondering if anyone else who has had a recurrence has undergone Erbitux on one day of the week, to then end the week with Cisplatin and Taxotere? I have an inoperable tumor at the base of my tongue and on my larynx. We are going this route for a few weeks/months, then possibly doing proton beam radiation at ProCure in Somerset, NJ. I then might be doing a clinical trial drug once the tumor has gone down in size. Apparently this drug has been promising, but it takes a few months to kick in which is why we have to start chemo to stop the very aggressive tumor growth.

This is all so overwhelming, not the having to do the chemo and more radiation, again, although I am by no means looking forward to it. I am just trying to stay positive through all of this, for myself, but also for my family and friends. The kids are only 4 and 6 and don't really know much more than I need more medicine to make the boo-boo go away. I know that the percentages are not in my favor, and I don't go around saying this to people who ask, but I know. I hope this does work and that it goes away but I know realistically it may not. I'm not being negative when I say that. I am just acknowledging the facts that are out there. Do you know what I mean?

Katie, Im so very sorry you are going thru this. Ive seen thousands of members come thru here over the last 6+ years Ive been with OCF and I do not remember seeing this type of treatment plan before. I still suggest going to another CCC. Johns Hopkins is in MD and not that far, Philadelphia has some top treatment facilities like Fox Chase and HUP.

Best wishes!

Here is the CCC list. I know you already have set up a plan at a facility but please dont rule out these top hospitals.
CCC List

I was in a bad situation with my third round of OC. I had to choose weather to be treated or to quit while I was ahead and pack it in. My odds of survival were very slim. My plan was the wrong one and I finally gave in and listened to the OCF members and Brian Hill who helped me to understand I couldnt just quit without at least giving it a try to beat the OC. Even with all the surgical complications, I somehow survived. My point in telling you this is that even with slim odds, you never know.... you still could beat this. You are young which is to your advantage, your body bounces back quicker than an elderly person in the same situation.

Wishing you all the very best with everything!!!!!

I had TPF Induction chemo, which is Taxotere, Cisplatin and 5-FU, given in 5 days in three cycles spaced 21 days apart. Erbitux has been recently added to this or replaced some type of chemo, like 5-FU, for some types of Induction Chemo, and for palliative care. Mine, which I only could do 5 days, it's pretty harsh, killed all my cancer in the tonsil, and two lymph nodes, unknown to me for 8 months, and is very effective in shrinking, and killing cancer, but does not usually last more than a year, at least for induction Chemo, and additional type of Tx like surgery, radiation or chemoradiation is needed for a cure. My tonsil tumor never came back, but the lymph nodes did after 9 months. TP, TPF is really what started the organ preservation treatment movement with chemoradiation for larynx cancer, then others were added like oropharyngeal. Now there are all types of Induction Chemo's being investigated. I know of someone from another blog who went to ProCure in NJ for Proton BOT treatment after a recurrence.

Here is one that is weekly in palliative care, called TPC:

http://clinicaltrials.gov/show/NCT01437449

Another for Induction Chemo is called TPE:

http://jco.ascopubs.org/content/28/36/5294

I hope this helps

It was PF not as I written PT.

Katie-
I have read your posts, and I just want to let you know that I am one more of many who is rooting for you and praying for a good outcome with your treatment. My husband's case is different from yours, but I have found us on the Recurrence Board as well. Everything in the world shifts perspective. Our 3 kids are 10 and 12, and since April, my heart has been broken and then glued back together with hope. You are amazingly strong, showing a sense of humor and self-awareness. All those feelings you express are real and true and, most importantly, legitimate and acceptable!

My very best to you,
Mary

Dear, Katie.

My heart breaks for you. My diagnosis was indeed different than yours, but what makes us similar is that I have gone through 2 rounds of OC, as well. The first was when I was pregnant with my second child and my firstborn was barely 2 years old.

My second round came when my kids were just 3, turning 4 and just over a year old. It's so hard to explain to them what's going on. I pretty much did the same thing that you did in that I said that Mommy was sick and that I was going to go to the doctor every day so that the doctor could give me medicine to get better. It told my oldest that the medicine was going to make me sick and sleepy. I don't think anything can prepare them for what they witness when you are in the throes of treatment. I guess the best you can do is surround them with love, make sure that they know it's not their fault, and perhaps get them some time with other family and friends for some normalcy, so their not always seeing you hooked up to feeding tubes and IV poles.

No matter what, I wish for you the best possible outcome because you deserve a lifetime with your family. I have learned in recent years that life is indeed so very unfair. I admire your strength in the realistic tone of your posts, but I will never give up hope that science and medicine will keep you with us for a long time to come.

You and your family will be in my thoughts.

Love in OCF,
Kerri

Thank you all for posting. It helps. I'm suffering through some severe nausea, even with the Compazine, Zofran, and Ativan. I haven't thrown up, yet. Hopefully I won't. I hear that the more extreme a skin reaction I develop, the better, so bring it on! Just want the nausea to go away. I don't remember being this nauseous on the cisplatin/taxotere/5 F-U. But I still had the radiation in me and that with the mucositis made me puke, a ton, which I guess brought some temporary relief. This is uncomfortable but at least my throat isn't on fire from the radiation.

This is truly an awful cancer to have to live through.

I'm so sorry to hear what you're going through Katie. You are definitely a warrior and I'm sure you are fighting to be with your children, they will be forever grateful to you for fighting as long as you can! My father is the one with cancer, my mother his caregiver and I just can't imagine the pain he must be enduring. I'm so proud of him for fighting and not giving up. So, from a child's point of view, thank you for not giving up! You are in my prayers