Cisplatin with radiation; to do or not to do?

Curlyn

Hi Everyone, I think I know what I will do but am interested in your opinions. Scc bot lateralized to right 2 mm, hpv+, mets to lymph nodes right side- surgeries have removed everything that could be seen, stage III. I start radiation next week. Hpv+ is very sensitive to radiation with higher cure rate. I'm going into this treatment (a fairly large area) with morbidities from two surgeries, including swallowing deficit. I also have the painful throat from hell because tors last week. I weigh around 118 lb and no fat. Cisplatin is the radiosensitiver that will double my side effects from radiation, but he tells me will not affect any distant mets, only works locoregional with the radiation. Doc thinks it might increase my chances by 5% but could also only be a low 1% effect, no way of knowing c hpv+ ad studies not in yet. He admits that it's imperative for me to finish the rads and if chemo makes the side effects too difficult to get through rads, that's very bad. I'm young, I need to swallow after this. I don't want increase risk of osteonecrosis of jaw, teeth problems, hypothyroidism, etc. He had offered a schedule that will allow weekly chemo instead to stay on top of things. I'm honestly considering, for the sake of 1-5% and no guarantees that it will help, but indeed will increase radiation side effects, why risk it. I'm at a big center, top notch docs. My family seem to feel as I do. What do you think, please be honest knowing that the rest of my life might consist of only smelling other people's good? Has anyone c hpv+ made same choice? Thank you!!!!!

CivilMatt

bet to win

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

Curlyn

Thanks Matt, I know you have

Thanks Matt, I know you have really been around the block with this disease reading some of your posts, so appreciate your input. Erbitux isn't an option for me, and knowing that there isn't even a guarantee that cisplatin will help, but might cause a lot of trouble for me to get through radiation is tough.When I looked at the markings on my face and neck the other day, there isn't much left that it won't touch.Hearing the 1% chance is a no brainier, hearing 10% would be another one...but 5%? Is the risk even worth the long term problems just for chemo? One thing I will do is speak the radiation doc again, and go to the chemo classes...and listen to stories from survivors. Thank heavens this site.

swopoe

My husband wasn't hpv

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.

Curlyn

Thank you swopoe. I wish you

Thank you swopoe. I wish you both well.

Klingels

Chemo and Radiation

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.

hlrowe

I had Cisplatin and Rads

I had 6 doses of Cisplatin - once/week and 35 rads over 6 weeks - two/week.  Finished June 2012. No surgery. Tumor near my epiglottis into some lymph nodes. No mets. I had a trach for 6 months because my throat was practically closed. I thought my life as I knew it was over. 

Life is normal again. Took awhile to get back here. Taste is 90% normal and I can handle medium spicy. Habenero days are over though.

Yes, Head & Neck treatment is very tough. I lost 40 pounds because my body was metabolizing like crazy during treatment. Did they recommend a PEG? I was overweight and went without. 

Take it one day at a time and you will return to abi-normal before you know it! Hard journey but you will make it through!

 

Sprint Car Dude

I Did

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.

Curlyn

Thanks! Your stories are

Thanks! Your stories are positive! I've asked so many questions, spoken to so many people. When I spoke to radiation oncologist he felt chemo inferred a 13% increase for locoregional control. Said the 1-5% was probably for os. So will go with both treatments. Start next week. Cheers to all!

nikolaf

Good idea.

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!

OKCnative

47yr old male with SCC BOT

47yr old male with SCC BOT stage 3 HPV+.

 Just finished my treatment; 35 rads and three mega doses of Cisplastin. No surgery yet - they may remove one still slightly large neck node.

Went without a feeding tube. Yes, the treatment was total hell, but I'm confident in my team. I much preferred treatment first and surgery  only if necessary.

 

HelenBack

2 cents

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

 

Curlyn

Oh my gosh! Once again, you

Oh my gosh! Once again, you all rock for your support and telling me your positive stories. I start tomorrow. 1 chemo/ week; 5 rads/ week. I'm just maintaining my weight on Boost but can swallow a bit better today so will need to eat bulkier food. I agree that junk food isn't the way to go, if possible. Will get probiotics today, have friends who are helping to keep us in meals ( we also take care of an elderly person). I know that my taste will change but I am reduced to chewing Tylenol at the moment, so am practicing for gross. Good luck to your husband nikolaf! Love to all of you!

phrannie51

I know I'm late to chime in...

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

Curlyn

I'm doing it! Chemo tomorrow.

I'm doing it! Chemo tomorrow. It's scary but you all did it! Somehow lost my last comment but have been trying to eat eat eat until I can't. Gonna kick butt!

Dean54

Keep us informed how your

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

Curlyn

Dean- Will do. Day 2 rads,

Dean- Will do. Day 2 rads, tomorrow chemo.