Hi Colin

its very hard not knowing but can only hope he’s just getting on with his treatment bless him.

i sent a friend request a month ago but no response to that but I’m sure he wouldn’t have seen it with all his stress etc.

take care 

Carol

Hi Carol and Colin,

I'm still here. I just finished chemo and, have a little over two weeks more of radiation. When it's over, I'll have had 39 radiation treatments instead of the original plan for 25.. They said the first for weren't being counted because they didn't target the new cancer area and,because the cancer was growing, they increased the dosage and added two weeks. The chemo was really bad. Though it was going to kill me. I ended up in the hospital because of it. I also found out that they can't tell if the cancer has changed with a CT or PET because of the edema from chemo and radiation was so bad they cloud the image. They said it would take about three months after treatment before a CT scan or PET scan would work. I reminded them that that was past the time they gave me to live if it didn't work. I didn't get a response. My tongue swells up past my teeth and I can't close my mouth. That makes me a drooling mess until the swelling goes down.It usually only lasts a day or two.   

On top of all this, we went to see my my 94 year old mom yesterday. Within an hour of us leaving her she passed away. She was in great health until about a year or so ago, then went down hill fast from kidney disease. Fortunately she didn't suffer much. My brother took care of her at his place until the end. I, unfortunately wasn't a lot of help.

I hope you both enjoy the holiday weekend assuming you're in the US. It keeps me from being on the road half the afternoon to get to treatment and back for three days. Instead I'll be shopping for some suits that fit. I've lost 55 pounds and really didn't need to lose it. I look like a stick figure with a big head. 

Anyway, that's where things are with me. 

I hope you're doing well,

Marv

Hello Marv!

I’m so so pleased you have replied to our messages and that you are getting through the worst of the treatment. I always find it so hard on here not knowing how new friends are doing. Sounds like you’ve had the bad chemo experience, so sorry to hear you had to be admitted.  I can sympathise as I felt like I was dying too! I had cisplatin and NF5U? I felt terrible! In fact my district nurse was worried that I might not make it at one point. It’s quite amazing how the body copes with all that poison. 

I hope your tongue swelling gets better soon so you are more comfortable in your mouth.  Do you have a feeding tube to keep up your nutrition and weight? I tried very hard with the help of hubby to have as many bottles of food supliment syringed in my stomach tube as possible to try and keep my strength up.  

Hopefully your scans will bring some good news and give you many more years to get on with living. 

Try and keep in touch but I understand its not always possible when you feel so rubbish. I will just keep sending you positive thoughts.

Oh by the way I’m in Canterbury in England! Where are you in the US ? 

Take care 

Carol  x

Hi Carol,

Yes, I live in the US in Michigan. We usually spend our winters somewhere south to get away from the snow, like Florida or the Alabama coast. It's beautiful down there from about January through April. I don't think we'll make it this year. Based on my prognosis, I probably won't make it any year but, I'll fight it until there's no hope. 

I did have a feeding tube put in. I was eating on my on and maintaining weight after surgery and once the original feeding tube was removed until the cancer came back and became evident. Then it became more difficult to eat. Since radiation, the swelling of my tongue and the floor of my mouth, along with the bad taste made my decision to have a PEG tube installed. I started losing weight once this PEG was installed. Bosst VHC helped slow down the weight loss but, I found a product that's great for people going through this. It's Scandi shake mix. It can be purchased at Walmart on line. My wife combines them with some of the high calorie TV dinners or with chicken, kayro syrup, canned chicken, sweet  potatoes, yogurt, etc. and I get meals that are around 800 calories each and loaded with protein. Unfortunately, it was a recent find. Fortunately, my weight is holding and increasing slightly now. I would recommend it to anyone who needs to add weight.

Once I'm done with radiation, I have to wait until late November or early December to get PET scan and a CT scan. If they show cancer, I can go to a clinical trial at the hospital where I'm being treated. They have several going on there now. Another option may be Keytruda because I have the PT-1 and PTL-1 receptors which make Keytruda a very good option. They said if nothing works and it progresses at it's rate as of last check, I have a few months, maybe a little more. So, the outlook for me isn't all that good. Already made and paid for funeral plans so my wife doesn't have to. My last slim hope is for a good clinical trial outcome. Th oncologist agrees with me on that.

Take care. I hope things are going well now for you.

Marv 

Hi Marv

Sounds like you have your diet all sorted, I’m so pleased you are putting on weight and not loosing it. I had Scandi shakes and fortisips  prescribed to me by my Oncologist, paid for by our National Health Service. They really helped me keep the weight on. I was told if I loose too much weight the treatment wouldn’t work properly and my mask wouldn’t fit my face properly for targeted radiotherapy. Thankfully I maintained a lower weight (lost 2.5 stone over all during and after treatment) 

i know your thinking only too well with your organisation of your funeral etc . I did a similar thing getting my affairs in order in case of an early departure! My treatment seems to be keeping me well but I am in constant pain from the severe burns on both sides of my neck and from the neck dissection. I live on pain killers and struggle with a very sore mouth when i eat anything that’s not mush!  Somehow we just have to muddle through and enjoy everyday as much as possible. I know I try to remain positive. 

I hope you can get away after treatment, if only for a little while to get some normality back and quality time with your partner. bless you 

I will keep thinking of you and hope your keep in touch 

Take care 

Carol x

  Hi Marv

 Pleased to hear you are still here and fighting. I am amazed that you are able to eat. 

Like Carol I assumed you were English.  I am English but retired in 2002 to France - in the countryside.  We had a home in Vero Beach Florida for 21 years but sold it 18 months ago.We used to spend the winter there, but it was becoming expensive to maintain - insurance alone was 3500$.

You are obviously more thoughtful than I. When I was hanging on and times were bad it didn't occur to me to arrange my funeral.  I am very impressed by your positive reactions.

I hope that the news will be favourable in November and you can join a trial.

My best wishes.

Colin

Hi Colin and Carol,

I'm not really able to eat right now. I could eat very soft food but it tastes so bad I don't want food orally. The radiation has caused part of my throat to swell. Hopefully it will go down soon.

Well ,the news just keeps getting worse this week.My 94 year old mom passed away on Saturday. We had just gone to see her at my brothers house. He called us an hour later and told us she passed away shortly after we left. He funeral is tomorrow. 

Also, I have a new radiologist. She did a physical exam of my yesterday, tongue which is something the previous radiologist never did. She said the tumor hasn't shrunk. So, we're not going to do the extra week of radiation since it and the chemo combined did nothing and the radiation dose is so high it's causing a lot of permanent damage. I still have to finish my last three treatments before I can move on to another treatment plan. The radiologist sent me to see the oncologist who said they're going  to put me on  Nivolumab (Opdivo) which is an immunotherapy drug.  If it works, it works well. The downside is that it's successful in only about 16 to 20% of oral cancer cases. If that doesn't work and I'm still around, then possibly a clinical trial. I start the  Nivolumab in about two weeks. They said they would know after one or two doses if it's accomplishing anything. It's administered once a month. Needless to say, this hasn't been a good week. 

I hope things are going netter for you than they are me. 

Marv

how long did they give you to live before you survived it 

Hello 

i am in your same situation but my cancer is srage 4 my last pet scan result neck clear but in my tongue thr's a little sign . So i am having another biopsy this week . My question is how long it take to eat solid food again? I finish my treatment in june but at today i cannot eat or chewy anything.

thank you