Hi everyone, my name is Saskia and my husband Ron was diagnosed with oral cancer last year early Spring. He had an 8 hour surgery done, after that 35 radiation treatments, then up to heal. In January this year, his stomach tube could finally be removed. He did complain about a swelling that was hurting him. Doctors said...just massage it, it will go away. It did not and after loosing 10 kg because he couldn't eat, and taken into hospital because of dehydration, they finally looked at it and peg went back in. The cancer was come back and now it was a huge tumor. 3 treatments...no improvement. Between all this, the new stomach peg was leaking severe, no food would stay in. I feed my husband with syringes, as he got muscle pain (he's weak) so at one point I was feeding him every two hours, so it wouldn't leak too much. Lucky it healed and leaking is over now. Last Monday the doctor told us chemo is not working as the cancer is invasive and agressive. (my husband has one big and one smaller pimple in his neck, that is also cancer)
Now we're waiting for a meeting as our doctor doesn't know what to do next, so he need to talk with another doctor. I just called to know what is going on. Also wanted to know my husbands stage. Assistant couldn't tell me and will call me back after the weekend.
So far our story in short version.
ps...my english could contain some mistakes as it is not my first language. I'm from Holland, live with my canadian hubby in Canada since 2002.

Welcome Saskia to OCF,

Your husband does have some issues. The PEG issues seem OK now and he is at least getting sufficient nutrition I hope. As to the return of cancer that is so unfortunate. Just curious, how quickly do you feel the new tumor was noticed and Ron got into doctors again? It sounds scary that by the time you noticed it was a "huge" tumor.

And what sort of treatments is he undergoing now, the three you mention, chemo/rads?

Lastly, do all you can to seek out the best skilled doctors you can. You may have to go to a large city but the recurrence is very serious and you have to act strongly and swiftly to get the very best care now. Best to you and Ron, don

btw - your English is just fine.

Thank you Don for your welcome. Yes, the peg is finally working well. We think the chemo made it hard to get the infection around the peg healed. But antibiotics and no chemo for a while helped. Ron noticed the swelling(tumor)in January, and mentioned it to the doctor he had that time. They thought (!!!) it was a swelling as a result of the radiation he had the summer before, as he had more swellings, small ones, and they would go away with massaging. But this one did not. It was April when they found out it was cancer again. The tumor was huge by that time. He can't have rad anymore and the chemo is not working so that is stopped. He has no treatment at this moment. We are waiting for an appointment for a phone conference in Yorkton hospital, as the doctor is from Regina.(saskatchewan)We heard last Monday that chemo has no use anymore, and wait since that time for the phone conference. The doctor said he had to talk to other doctors to see what they can do next.

We are being treated in a large city. Not much choice in Saskatchewan, to be honest. Traveling is very very uncomfortable for Ron, and Regina is 3.5 hours with the bus. (truck is not good enough for long travels)
Ron also has lots of mucus, so I'm thinking of that mobile suction machine mentioned in another thread here.Ron has problems speaking too. Lots of times I really can not understand him. He also seems to get more and more depressed, or just out from medication, I'm not even sure which one it is. We don't talk so much anymore, because it hurts him so much. It's a hard road.

I agree what Don said. You need to get to the best hospital for ENT, and cancer, and need to hit it hard, probably with surgery, rads and chemo. You can also travel to the US, if you can, stay at ACS Hope Lodge during treatment for free. Radiation can be given a number of times, under certain circumstances, and by experienced radiation oncologist. I had rads 3x to the same sites, and the same with chemo. I had intraoperative radiation therapy, which is an aggressive multi step treatment process and my last chance after 4 recurrences, which is similar to bracytherapy. Then there is cyberknife, under similar names, which escapes my mind. As far as chemo, Don and I had TPF induction chemo. Don add all three cycles, I only did one, but that will knock that cancer out, if he can take it. It's not easy, but very effective. I don't think there is any time to wait on this, and sounds very aggressive. If you need and further info, just post. Good luck.

Sorry but you really can't wait another minute. You really need to get somewhere where there is a very competent comprehensive cancer center. His life depends upon quick action.

David, I am searching and asking around what else is available in the form of a good cancer center. We are now in the Allan Blair Cancer Center in Regina.
Ron had 35 radiation treatments last summer. The doctor said he couldn't have more right now. We hope to hear more on Monday what will happen next, and if surgery is an option at this time. For chemo, the doctor said he gave the strongest chemo possible and it still didn't work.
I will keep you updated. Thanks for all the advice. Very much appreciated. I still have to find a way to make a signature thing. It looks complicated so it will take me a while I think to figure out how to do that. Thanks for your patience. :-)

Saskia, please look for a small flashing envelope next to the "My Stuff" tab. Its located towards the top center of the page in the middle of the menu bar which goes across the page right under the OCF logo. Click on the envelope to take you to your private messages. I have sent you a message with a link which explains many things about the forum. It even goes into detail on how to make a signature.

I would ask a few things... Is this tumor where the original cancer was located? Where exactly is it? How large? Sometimes they can deracinated an are if didn't receive ,aximum does first time out. there is photodynamic therapy that is supposed to be quite effective against recurrences, assuming they have access to the tumor to expose it to the light. I can also give you the name of a top notch surgeon in Toronto if you are able to travel, since you are within Canada there should be minimal trouble with insurance- if noting else maybe they can send his to my surgeon for a second opinion. He does a special surgery - that allows him to see the cancer in real time. It ups the cure rate substantially. Let me know if you want his name. Hugs!