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nasopharyngeal treatment without radiation

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

I was hoping to find info from anyone who received successful treatment for NPC using chemo only. I was diagnosed with stage 4 NPC in May that had spread to my spine and other bones. After much consultation we decided to go ahead with Cisplatin and Gemzar as opposed to chemo and radiation concurrent or radiation only. After 3 rounds of treatment a PET scan came back clean, showing no sign of cancer. If this had been my first PET scan I wouldn't have had treatment at all. I have agreed to at least one more round of chemo and have received one infusion last week and will recieve one today. The Doc has suggested that we might start radiation to the head and neck soon though I'm not sure what he intends to radiate as there is no more cancer that is visible there. Here's my question:
Has anyone received ONLY chemo for NPC and was it successful? I would sure like to avoid any further pain and discomfort and yet would do anything to avoid a recurrence. Is anyone aware of studies that have used only chemo with successful outcomes? Any help would be much appreciated as this is a difficult decision. Thanks in advance.

Bob

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Bob,
Hello - welcome. I had (HAD) base of tongue cancer, so don't really have knowledge on the subject of NPC. For my treatment, my docs said the chemo would beat down the demon, and radiation would finish it off. As you know, just as each of us is different, so each of our cancers is different. I don't recall hearing of anyone being treated with chemo only, but that doesn't mean there aren't folks here who went the route. There are lots of helpful folks here, and someone'll come along shortly, I'm certain. Do well.

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Hi Bob,

I had NPC stage 4 as well, but I received 40 treatments or radiation and 6 chemo therapy treatments. I had a huge mass in the nasopharanx and my doc's said radiation would shrink it and chemo would kill it.

I hope you can get more information from your doctors. Welcome to the boards!

james chambliss's picture
james chambliss
Posts: 70
Joined: May 2010

I have NPC stage 3 and i like John had a mass on the nasopharanx and after radiation and 3 rounds of chemo i didn't want to do the last 3 rounds of chemo. So my chemo doctor ordered a PET scan for me and the results were good, but i still had a small mass on the back of my nasopharanx. All the other cancer in the Lymph system and on the base of my tongue were gone. He said if i let them finish the treatment. That the cancer will be gone. So i am listening to their advice. I understand not wanting to go through anymore pain, but my life and my family are worth it. I hope the best for you.

James

james chambliss's picture
james chambliss
Posts: 70
Joined: May 2010

I have NPC stage 3 and i like John had a mass on the nasopharanx and after radiation and 3 rounds of chemo i didn't want to do the last 3 rounds of chemo. So my chemo doctor ordered a PET scan for me and the results were good, but i still had a small mass on the back of my nasopharanx. All the other cancer in the Lymph system and on the base of my tongue were gone. He said if i let them finish the treatment. That the cancer will be gone. So i am listening to their advice. I understand not wanting to go through anymore pain, but my life and my family are worth it. I hope the best for you.

James

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Stick it out James, easier said than done I know. I know the troubles chemo brings, it is no walk in the park. Its a terrible week. I just finished my last chemo last week, cisplatin on Monday and 5FU for 5 days, 24hrs a day. It was my sixth treatment and my doc's said the same as yours, finish treatment it will finish the job. I had the same thoughts as you, I didn't want to go through the last three, I wanted it to end so I can move on.

james chambliss's picture
james chambliss
Posts: 70
Joined: May 2010

Thanks John, i love this chat room. So many of us have faced the same things and it gives me hope. The fun part is i started school and am going to do my best to continue with it through the chemo. I have hope! We will see.

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

You are a trooper! I actually finish my BA this week. I refused to drop from school during treatments. It was rough but I didn't want to put school on hold for 3 months. Luckily you are only doing chemo so it wont be so bad. I was taking classes during radiation and chemo, online however, but just having to do the work was a pain. It was a pain before I had cancer lol.

Good luck I know you will kick cancer's arse while getting your edjumacation.

james chambliss's picture
james chambliss
Posts: 70
Joined: May 2010

Thanks John, it's good to know we are not alone. It gives me hope.

timreichhart
Posts: 195
Joined: Aug 2010

I had to get chemo and radiation at the same time so most likely you would probably get radiation.

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Cisplatin and FU5 at the same time as the rads- and I'm unknown Primary NPC. Mine had only resulted in C showing in two neck tumors, so it hadn't spread too far.

kcass

timreichhart
Posts: 195
Joined: Aug 2010

I had chemo first with Cisplatin and FU5 for 7 treatments and Radiation was last and I had it for 7 weeks. I am 4 weeks out after finishing treatments I go back to the radiation doctor 24th of this month for a follow up. Then oct 11 I go back to see Chemo doctor for PET scan to see if my cancer is gone and I hope it is.

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Thank you Tim. Did you have the chemo first because it had spread? Most protocols seems to be concurrent or radiation first. Mine was different only because of the spots on the spine and bones. Best wishes for your follow up and scan.

timreichhart
Posts: 195
Joined: Aug 2010

well adventurebob the cancer spread to my right side lymph node and I did have that lymph node removed from surgery. So my chemo doctor wanted to do chemo first the radiation last for some odd reason.

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Mine had also spread to right side lymph node and left as well as below the brain stem which is where they originally intended to radiate. All areas have completely cleared up now and appear healthy. It seems a shame to radiate healthy tissue that worked so hard to get rid of cancer. How has your recovery been? Was there testing between chemo and radiation? Thanks for your time Tim.

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Was the treatment successful Kent? I'm very pleased with the results from 3 rounds of chemo and I'm not opposed or for either radiation, more chemo and radiation or nothing further except watching and testing. Really whatever it takes but ideally not too much and not too little. I'll be obtaining some second opinions whatever is suggested and I value the experience on this board and the willingness to share it. Thanks for yours.

Bob

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

My Doc has done well so far and I'm inclined to take his advice and yet the rarity of NPC always makes me want to know how others treatments are going/have been. Are you now finishing up chemo only or chemo and radiation? It sounds like your treatment has been successful. Glad to hear it. Thanks for your time.

Bob

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

I too am a NPC survivor and understand your concerns about having to take radiation if you don’t need it. In your case you need a second opinion on your treatment, if you are going to a local town doctor get advice from a major cancer institution like John Hopkins or MD Anderson.

I would like to spare you all the pain that I have been through being over radiated. Also don’t be afraid to question your doctor on your treatment.

PS: I don’t want to forget to Welcome you here to CSN and I do hope you plan to stay and give help and support to many others like yourself just needing info.

God bless and be with you

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Thanks Hondo. I have been following the boards for awhile and have jumped in now and then since my diagnosis. I have appreciated all the shared knowledge. I will be getting a second opinion or two and I have also prepared for the probability of 7 weeks of radiation and everything that goes with it. I'm not very confident in the 35 day one size fits all theory behind this protocol and would be interested in a testing supported radiation schedule. And then there's the insurance approval dilema. You mentioned that you had been over radiated. Did you refuse the treatment eventually and pursue a new course? Very appreciative of yours and everyone elses time.
Bob

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