Introduction and a couple of questions

ciggy89

Greetings all.  My name is Gregg and I live in Raleigh.  I stumbled upon CSN while searching around for some recovery and after treatment topics on the web.  I was diagonosed in August 2015 with stage IV squamous on base of toungue and spread to lymph nodes.  Was fortunate enough to get into the de-intensified treatment study run out of UNC-Chapel Hill - Dr. Chera. Also fortunate i could get same treatment in that Study really close to home at Rex in Raleigh.  1 less week of radiation - so only 30 rides in the head microwave as opposed to 35 and about 40% less cisplatin on the chemo side. After 2nd PET post treatment, a month ago I got the word they didn't see any tumors or remants of the disease so extremely fortunate on that front as well.  As you all know the side effects post treatment really suck - dry mouth, weight and muscle loss, irritated throat, etc. but a lot better than the alternative.

After reading several threads and stories on this site for head and neck my heart goes out to all of you who have had to endure this and might be in the throws of it plus your families and friends who help you through this unpleasant speed bump on the life road.  Couple of questions for anyone who might be in the know.

I found it odd that when doing the PET scans they didn't scan the brain area.  Anyone know why? I would think with the tumors pretty close to that part of your body why they wouldn't look up there.

When they say all results are negative in the PET is it still possible or even probable that there are mutated squamous cells in your body from the disease that just haven't joined up with their deviant friends to form another tumor yet?

Has anyone run into where they still don't feel themselves from a mental health perspective?  working out everday and back to traveling every week for work definitely almost gets me back up topside, but still not right if you know what I mean.  Not really interested in any pharma solutions either.

 

 

 

kdot2003

Hi there.  I assume you were

Hi there.  I assume you were HPV+.  I've been reading about the less intensive treatment working just as well.  I had the whole tx.  It ended Dec 16, 2015.  Maybe one day the protocols can be changed.  NED definately means just that...nothing seen at that time of the scan.  Stray cells can be out and about.  I didnt get a neck dissection and I wonder if that was wise.  Nothing glowing now but what about down the road....

I'm definately a changed person.  I do appreciate life more but I am still grieving life before cancer I think.  The side effects suck but really its just the carefree attitude I had before that I miss.  I had thyroid cancer but that was so different.  It wasnt on my mind 24/7 and my type hardly ever mets.  This SCC is worse.  Have you ever read the survival rates?  Dont.  I know thats just a dumb statistic but its still scary as hell.  Its good to talk (type) to others about it.  

Karen

wmc

Welcome to H&N group

 Welcome to the H&N Group, but sorry you need to be here. With stage IV BOT and it had gone to a few lymph nodes, is why it was IV is the lymph nodes. If it had not gone to some most likely it was a T2 or T3.  You asked why not scan the brain? Head & Neck SCC  if it spreads, tends to go to certain places first. Lymph glands, thyroid but radiation seems to damage the thyroid and parathyroid on its own. It can spread to the lungs also. These are the most likely places it will go to. Has it gone to the brain, yes, but I know of only one and she fought cancer 10 times before it did go to her brain. Terrie was an amazing lady and fought more than anyone I know of. She beat it 10 times and lost on 11. She had 48 radiation treatment and almost a year of chemo, and then had to have a laryngectomy. At 40 she had Oral cancer, then throat cancer, and it took quite a toll on her.

You asked if it was possible the PET/CT is negative is it possible some are still there? Anything is possible as there are no guarantees, but it is Very unlikely. You see what the radiation does is scrambles your DNA so even after you are done with radiation your DNA is scrambled and if the cells divide they can't multiply and form anything, so it can't grow if they divide.  It is more common to have a False negative show up, especially if it was done soon after treatment, say in the first few months. This is something almost everyone will have in the back of your mind once you are told by a doctor, You Have Cancer. That is normal, many have PTSD, Anxiety, even a panic attacks for a while. and this too is normal if you get them. It is just life, and we have to accept it and have it treated or it can really get bad. It by no means someone is week, or still has some fear, that too is normal. Not dealing with it or doing the denial route will just make it worse and much harder to deal with. 

They thought I was a T4, N2, M0 before surgery [stage 4] but I got lucky and was T3; N0; M0 stage 3, SCC Supraglottic which is just above my vocal cords, but it had not gone to any lymph glands. My Lungs were bad so my only choice to live was to have my larynx removed and breathe through my neck. Also do a neck dissection on both sides as a precaution and they took 86 lymph glands, as a precaution. The surgery removed all my cancer and I never had to have radiation or chemo, just took my voice, but with the TEP Prosthesis, I have it back just sound hoarse.  Now I have Sevier COPD and can get [and have] a panic attack and feel I am not getting any air which will raise my heart rate to 135+, and yes it is scary as hell. Now add that I breathe through a hole in my neck and most everyone in the medical profession has no idea how to treat me or even get oxygen to me can be a little unnerving at times.  My surgeon trained me on what I need to tell the ER on how to treat me, so all is good.

Now last you said, " Not really interested in any pharma solutions either" I can understand this, but sometimes we have no choice. I have to take several to breathe, I really like breathing. I have pain from the surgery where they cut me from ear to ear and removed my larynx, and had bone spurs as well. It is hard to fully turn my neck as everything was cut, so I have muscle relaxers and have full use of my neck. Now best of all, I am alive, and only five thought I would live through this. In a strange, very strange way cancer saved me and I will live longer. I now breathe much better and the doctors no longer want to remove 30% from each lung. So for me, life is good.

Sorry it is so long, but really wanted to answer your question and explain the why.

Bill

 

ciggy89

Hi Karen and Bill - nice to

Hi Karen and Bill - nice to meet and correspond with you. I will keep you both in my prayers for continued NEDs.  Really appreciate your insights and perspectives.  quite more severe than what i have had to endure.  no residual "pain" for me and i can totally appreciate what a different level that puts the new normal into in terms of requirement for prescribed helpers. Yes on HPV+.  think the tumors were a 2b size (?).  initial was 3 but on further feeling around they said a 2b. Was fortunate the tumor board said a 2b as if they said a 3 i wouldn't have qualified for the de-intensified program.   my comment on the pharma was more around mitigating the feeling of the blues a bit.

cardoza33

I am a trial lawyer and

I am a trial lawyer and wrestling coach who have never had any mental health issues.  I even lost a child 10 years ago and was able to work through that without the assistance of a professional.  I consider myself very strong mentally and can handle losts of stress.  I recently saw a psychiatrist through my cancer center because all of the sudden (during recovery) I started having anxiety.  I got my first NED scan last month and I am slowly recovering and feel pretty good.  Dr. told me I am "over driven" I don't do well sitting around the house.  Once I get back to work, working out daily (which I did before I got diagnosed) and get back to my life he said he would bet it all goes away. In the meant time he gave me a very low dose of anti anxiety meds until I get my life back.  Its working for me.  Its a very low dose so  I have no restrictions on my life at all. Frankly I can't even tell I'm on anything, but I don't have the anxiety.  This week  I started back to work and even forgot to take it one day.  Doesn't hurt to go talk to someone.  Good luck. 

bebo12249

I'm not a physician but my

I'm not a physician but my understanding is that H&N ca usually doesn't move to the brain, and that's why they don't scan there. And, yes, the PET scan, like any diagnostic test, may not be sensitive enough to detect a disease process in a very early stage, or in your case, a few lingering cells from the first disease. But, when a flowup PET does detect them it should be in a very early stage so the treatment may be more effective. .... we all worry about a reoccurence but be thanksful for all the NEDs as they come. bill

phrannie51

Hi Gregg...and welcome to

the club nobody wants to join.  I was in treatment 4 years ago at this time....I was fine for a year (except at scan time) as far as nerves and stress over a recurrence was concerned.  But as time passed I seemed to get more anxious.  Other things were happening too, of course, but by summer at almost 3 years out, I was riding an edge than just never went away from morning till night.  I was not having any fun ever....I felt like my antenna's were up and ready to see anything coming my way.  My Dr. gave a script for some anti-depressents/anti-anxiety meds.  It took me a week to even take one....I too, didn't want a medical answer to what I thought I should be able to work out myself.  Guess what?  I feel normal again...I'm loving life, enjoying my husband and friends, I even sleep in now and then.  All the meds did were bring me down from the edge....everything else is as it should be.  Everytime I see my Oncologist I thank him over and over.  The depression and anxiety were sneaky...and what started out as small just grew out of control.  I'm not a nut case, honest . 

p

Barbaraek

Welcome Gregg

I'm glad you were able to do the less intense treatment. My husband had the whole enchilada and it was brutal. NED is a beautiful thing, and I hope you get to hear those words many times. 

As for not feeling "quite on" - chemo can sometimes do that...leave you feeling a little fuzzy or not quite at your mental best. Some people refer to it as chemobrain. I don't think it is unusual and it varies in severity. Give yourself plenty of time to recover and adjust to your "new normal". I think basic health suggestions along the lines of good nutrition, exercise and sleep are in order. Are you adverse to vitamins? I know  lot is out there on CoQ10 as a supplement...but I don't have any personal experience with it.

Barbara

squiggyrn

Gregg my name is Mike and a

Gregg my name is Mike and a Nurse once told me that my life would be completly different after the treatment both metally and physically and I did not beleive her, I am 3 years out and the cancer has made changes in my life. Sometimes I run into people that i should cknow and cannot put a name with the person or where I know them form. I was told from another cancer suviver that after the chemo she stills has a chemo brain 5 years out. I accpet the changes and beleive that it is no big deal at least I am looking at the green grass and not beeing under it. I had to change my job and tried to go back to school but did not work to well for me now I am able to return to what I use to do. I guess the short and sweet of it is that I am happy to be alive. Thank you GOD