Cisplatin with radiation; to do or not to do?

Curlyn,

I had Erbitux, so I have  that out  of the way.

Chemo works with the rads to increase the treatments.  There are people on here with surgery only, no rads or chemo, but that isn’t most of us.  This decision making when it comes to treatments, we all have made.  Do I go this way or that?  Try to pin down your doctor, look him (or her) in the eyes and get the honest truth out of them on what they really think is the path to a good outcome.

I’ll be honest, I have dry mouth, my thyroid is toast, I take twice as long to eat as my wife, I drink lots of liquids, I eat everything,  I enjoy eating, I enjoy smelling my food (and flowers).

I chose, surgery, Erbitux and radiation, no going back now, no do overs & 5y 6m post.

Good luck,

Matt

My husband wasn't hpv Positive, but he did do cisplatin weekly along with his rads for tongue cancer. He was able to complete the full course of rads and chemo. He was only 41 while going through treatment. His docs said that the chemo would make the rads more effective and they wanted to hit it as hard as they can. My husband was otherwise healthy and they thought he could handle it. We have 3 young kids, and my husband wanted to do everything the could. This was all back in late 2015-early 2016. Now, my husband is 2 years out from diagnosis. Other than the scar on his neck from surgery, and the fact that he doesn't like certain foods anymore, you would never know he was sick. Last night he ate a burger and corn on the cob for dinner. He swallows. He eats. He is great. As Matt said, no do overs. No regrets. I wish you the best.

My husband chose both radiation and chemo. He had cisplatin 3 times every 3 weeks and 35 radiation treatments for stage 4 tonsilar cancer that had also spread to lymph nodes. He tested HPV+. It has been a harsh journey, but our hope is that it killed the cancer. He is still recovering and hasn't had a PET scan yet, but that is our journey so far.

I was T1N3 SCC +HPV, I had the option of being in a study not knowing if I had gotten the Cisplastin or not. I chose to fight the cancer with every option available to me. I had 35 Rads/7 Chemo Tx. I have had 2 NED scans so far. I am glad I chose the option to fight it like hell. No dental problems yet, Dry mouth and crappy taste, Yes still. It is slowly improving. Still waiting to see the what the new normal will be.

PS. I am about 9 months out of treatment. Life is getting better every day.

i read a recent peer-reviewed article that mentions cisplastin plus IMRT is effective most especially for SCC of the head and neck.  My husband will start that treatment, as well, Oct 6.  Good luck to you!

My husband had BOT SCC T2N2b HPV+. He had surgery first, removing tumor with clear margins, along with a left side neck dissection, at Stanford. The team recommended chemo because one of the 4 affected lymph nodes had minor extracapsular spread. The surgeon was quite certain that they wouldn't have recommended chemo if there wasnt that extracapsular spread.

My 45 year old husband endured 33 radiation treatments as well as 2 large cisplatin doses and felt too yucky for a third. He lost a total of 25 lbs and never needed a feeding tube. I think having the tumor and nodes removed first might allow for a couple fewer days of radiation, but I'm not totally sure about that.

In any case, he did really well. He was back to work, riding his bike and eating normally quite soon after. He's almost 5 years out and hasn't had any major issues other than his thyroid flunking out. 

Everyone is different but there are many people who are doing just fine. I hope you will do fine too.

I'm sure you know this but you must start putting on weight now if you can. I don't agree with some advice that you can go nuts on junky stuff but high nutrition, high calorie foods are a must! I made giant peanut butter, ripe banana, high quality protein powder, whole milk, smoothies for my husband. He consumed lots of probiotics before and during treatment and we think that may be why he never had the dreaded thrush.

Good luck to you,

Helen

except to say, I'm glad you chose to do the Cisplatin along with rads.....from the beinning I've been a huge believer it smacking the beast with all there is.  As a young person, you have many years ahead to be cancer free, and you might as well hit it with a sledge hammer now.  I was 61 when I was first diagnosed....I did the three large doses of Cisplatin with the rads....and because my cancer was NPC, I had another 3 large doses of Cisplatin (6 total) along with 5FU.  I'm still here today, not too much worse for wear.

You've got this!!!

p

Keep us informed how your doing Curlyn, I start next week.