Head and neck after affects.

[djs]

Hi everyone, I'm interested in chatting about how everyone else is going/has gone through with having Chemotherapy and Radiation treatment? I had biopsy's done on my right hand side lymph nodes that came back positive, Had biopy's done on base of tounge and right tonsil which came back negative. Long story short I had a tumour at the base of my tounge removed and my right tonsil all the way back to the neck mussle. No primary was found but another biopsy from my lymph node under my chin came back positive.

So I was put through 7 week's, 5 day's a week Radiation { 35 }  and all up 5 week's, once a week Chemotherapy. Although the first treatment was a dose that was to last for 3 week's. I had a lot of problem's with hearing loss, ringing in the ears, nausea ect. Changed to weekly and still had problem's. I ended up with blood clots in my arm's where the Chemotherapy was administered. 

Ok I had the mouth problem's with ulcears, sorse's, trouble eating, loss of taste, finding food to eat without forcing it down, swallowing and even talking. But the affects from Chemotherapy have been worse than I thought? Spent all up 3 1/2 weeks in hospital from 

Blood clots traveled to my  lungs, temperature going above 39.1, swelling in my feet and knee's, very lethargic { although the painkiller's, blood thinner's } wouldn't help. It's been 6 weeks since my last Radiation treatment and have been told it will take between 3 to 6 month's before I might be back to normail?  

And now it's waiting 3 month's before I get an Oncologist allocated, have a PET scan to find out if they got it all. 

So I was if anyone else was/or is  in a similar situation? The not knowing and not having someone to talk to makes these 3 month's really hard.

David. 

[Christian79]

Hey David, 

I can relate to what you have been through, or at least part of it. I had a similar lump in lymph node, and they found the primary on the base of my tongue. No surgery, just 35 doses of rad and 3 big doses of chemo. They concluded last week. 

I have many of the same Sx. Ringing ears, fatigue, no sense of taste, and eating or drinking anything is a struggle. 

Do you have any idea / expectation of the PET? As in, how likely it is that they have got it all? I know I am plagued by the thought of needing to go through this all again. The impact on my body and life is like nothing else I have even imagined. 

It's 2 weeks since you posted, do you have an update?

[djs]

Hi Christian, over 7 weeks since last radiation treatment, just going through different problems. As everyone is different, everyone will have different problems. I'm still having problems breathing from the blood clots on my lungs. My temperature keeps going up and down but not over 38 anymore. Went through my body aching really bad. Because I spent the amount of time in hospital I've started with an exercise physiologist. I still don't have much taste bud's. Chocolate topping in my sustagen hospital strength helps. Although I can eat majority of food tastes disgusting so keep having sustagen. 

As for the PET scan, yes it does play on my mind every day. I was told that if they didn't get it all ( even a bit the size of a pin head ) that they would give me Max 2 years as it couldn't be retreated. So I try not to think about it. When the weather is fine it helps because I can go for slow walks and take my mind of it. If you can find something to keep yourself busy it help. 

As far as I know I still have at least 5 weeks before I have my PET scan.

I am a lot better with hardly any sores in my mouth, if I didn't have my breathing problems I would be more active. 

As my doctor said to me that everything in my body was destroyed by the Chemotherapy and it will take month's and months to rebuild it back up especially my emune system. 

Good luck and I hope you don't have to many problems. If you do ring the chemo nurse straight away. 

David.

[Jim644]

Be tough Dave,

I'm about to go through 7 weeks of chemoradition therapy next week for stage 4 largenal cancer 

Jim

[djs]

Sorry it's been so long. I'm still going through problems. My cancer is in remission. But my breathing problems is still on going. But I have found out it wasn't from the blood clots. The bases of both my lungs collapsed, I have CAC [ calsium build up in the polumary artiries, which happens to people over 70 ] but Chemotherapy can make it worse by more than 35%. I also found out that the hospital disscharged me the day after receiving my last Chemotherapy treatment? So everytime I tried to get help it was someone elses problem. I've had to go private without health cover. I'm not going to let lose on the hospitals but they need to really have a good look at them selves. One report had a reffering DR on it, the Dr doesn't even exsist? 5 months after being in hospital because I was struggling to breath, Nothing from them at all. Even after putting in a complaint, no help at all. I guess my warning is be carefull, I was lied to that I would get a Medical Oncologist allocated to me! It never happened. Just try and keep positive. David.