Hi All,

I'm starting radiation and chemo as an inpatient at Melbourne's CCC (Peter MacCallum Hospital) on Monday 30th November. I have had previous radiation to the left side of my jaw and neck and was told at the time that once treated that I couldn't have further radiation in that area.

Unfortunately due to a nasty recurrence in my tongue, which required two partial glossectomies to get clear margins I then developed metastic disease on and under(but not in) my left jaw and in a cluster of nodes in my right neck. All identifiable tumours were surgically removed on the 28th October.

I am now going to have a further 40 gray of radiation on my left neck and jaw and presumably 70 gray on the right side and my tongue will be included (it wasn't first time around). This will be delivered twice daily, at least six hours apart, over the course of 3 weeks. I will have chemotherapy (Cisplatin) on Tuesdays between treatments. My RO said that this type of regime would offer the best opportunity to knock out any remaining cancer cells, because they would have little time to grow back between treatments (not a direct quote but the gist of the converstaion).

He told me that this treatment is not without significant risk and that I will have a 20% chance of a significant disabilty on the left side including a 1% chance of spinal cord damage. He also said that some issues may take up to 18 months to 2 years to appear. I actually had to sign a form acknowledging and accepting the increased risks. I have agreed to the treatment plan since I'm really fighting for my life here and to do nothing is not acceptable. I also have been told that the side effects will be more severe and hit me much quicker than last time around.

I handled the treatment pretty well last time and had no naso-gastric feeding or PEG. I was back at work for 8 months before I got this latest recurrence and really was functioning fully both at home and at work.

I would love to hear from anyone who has been reradiated or had a short and sharp treatment regime like mine will be. What should I look out for? What should I expect? What was the outcome for you? Any information would be appreciated!

Many Thanks

Sue

Sue,

I know we have had more than a few re-radiated but I don't remember anyone having 2 a days during the entire time. Three years ago I was also told once was it but since then many have gotten it twice. I always said that given the 2 options I would certainly tell them to hit me again.

Good luck and lets kill this crap for good.

Sue

After my first radiation, I was told no more was possible. Even after the recurrence, the Radiologist was firm that only surgery was an option now. Even after the surgery, the RO said no radiation. When the pathology report came back and indicated that the cancer would indeed come back a third time, suddenly the RO decided to give my another 25GY in a concentrated one hour session on Cyberknife for 5 days in a row.
I was warned I may never swallow again as a result, but like yourself felt I had to do whatever it took. Oh, and they threw in more chemo also.
Sofar it is working out for me as I am alive.
So yes, I think you did the right thing
Charm

Charm,
I was aware that you had the Cyberknife treatment, but not aware of the time frame - eating and swallowing was not one of the possible side effects spoken about but that may because of the location of our Cancers. My RO seems to think that one of the biggest risks is that I may well incur nerve damage that will render my left arm next to useless, but he said it's really hard to predict exact outcomes once we venture into unsafe radiation territory. He says that risks start to rise very quickly at a certain point but that, that point is different for every individual. Based on my previous history he thinks I can handle more but with a significant risk factor. At least I will be an inpatient so I can be monitored closely. As the 30th looms closer I'm starting to feel the fear building!

David,
I'm starting to think that those of you who are HPV+ are the lucky ones! (If you can call anyone with OC lucky) Killing this cancer is foremost in my thinking everyday. Hopefully come the 18th December I will walk out of the hospital, both arms swinging (with maybe a naso gastric tube) and be able to spend a quiet Christmas in the sanctuary of my home with my husband and children.

Sue

Dear Sue
I can't help with your questions but I am very sorry to read what you are going through. Peter MacCallum has such a high reputation here in Aus that I would certainly go with what they recommend. I know of one OC patient who moved from Sydney for six months to be treated at your hospital in Melbourne.
I wish you and your family well
with love from Helen

Helen,
Thanks for your good wishes! I know that I'm being treated at the best place possible, at least downunder, but I'm just staggered that there is no-one else on this board who has been treated in even a remotely similar way. I know that no two cases are identical but it does scare me going into unchartered territory.

I also believe that you are also going to get a new dedicated Cancer Centre in Sydney. It is amazing that one doesn't already exist up there!

All things considered my family and I are doing really well, but none of us is looking forward to my 3 weeks plus as an inpatient, especially with Christmas looming!

Wishing you Continued Good Health.

Sue

Hi Sue,

First I want to say how sorry I am that you are having to face this horrible treatment again. Your bravery is inspiring. I just wanted to say that 2 times a day treatment is not unusual - although I havent encountered anyone thats had it, it is commonly reported as a method for 1st time radiation in academic journals on head and neck cancer and has a better chance of zapping your cancer.

I have also read a bit about re-irradiation trials. Its evident that some patients suffer with toxicity problems, but quite few don't. You are young and healthy and have a zest for life so there is every reason to suppose that you will do well, therefore as you say doing nothing is not an option. YOU ARE DOING THE RIGHT THING FOR YOU AT THIS POINT IN TIME. I think thats the only way we can look at these situations. I often wonder how I would have felt if my partners treatment hadn't worked and he had spent three months in agony because of chemo and radiation for nothing. The simple answer is he had no choice. He loves his son (from a previous relationship) and me and felt he had to give it a go. There is no point me even thinking about the whatifs.

For now focus on enjoying being with those you love and getting well. (Although I know its probably very difficult) I would try and practice a mantra that there is no point worrying about side effects that may not happen. If they do it may be a long time away and even then you will still have options.

I know this is not directly related to your sitution, but I hveto share - last night I heard about a friend of a friend -a 40year old marathon runner who went to bed a few weeks ago and never woke up. It really made me reassess all the time I spend worrying about my partner when there is nothing I can really do about anything - I should just be enjoying being with him.

Good luck Sue I think you are going to do good.

Warmly,

Cathy

Thanks Cathy,

I'm glad to hear that this is a treatment regime that has reached the journals. I came through last round (30 treatments, once a day, with weekends off) with flying colours so as you say there is no reason to be too pessimistic - but it also doesn't help knowing that I will have worse side effects this time. I'm trying to balance the building butterflies with retail therapy and spending quality time doing things with friends and family.

Ultimately I guess I'm just one of those people who likes to feel in control all the time and because of this damned OC the future is well and truly out of my hands. I still feel like I'm caught in a bad dream and that at some point I will wake up and all will be back to normal.

Sue

Sue, you have lots of support here! Wishing you the same good results (and lack of too many side effects) when you come out the other side. Send those butterflies back to their cocoons! Keep us updated.

Sue

I would be very suprised if your side effects were worse this time around than the first round of radiation. I know I was pleasantly surprised that the second round of radiation far in excess of the "maximum" did not have anywhere near the downsides of my first radiation, Yes, it true that the Trismus has snuck up on me again, but that just means I need to restart my Therabite exercises. As other posters have noted, you are doing the right thing. Best wishes
Charm