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It is finally over

lyolan1
Posts: 95
Joined: Jul 2009

Hello Cancer Fighters and Survivors. I hope everybody is doing well. I am 4 weeks out of 35 consecutive rads and 6 treatments of Erbitux. Aside from the rash from Erbitux, I was doing pretty good until the end of week 6. the rad cone down of week 7 and the first 10 days of recovery were very tough. In week 2 of recovery, my neck started healing, it looked like a charbroiled steak. I gave up the tube 10 days ago. I have put back about 8lbs. Hopefully the tube will be gone next week. Food is okay, not great, better than the tube. Actually started drinking coffee again over Thanksgiving.
I have been going through the posts because I have not been around for a while. I am really doing pretty good and am very happy and fortunate. For the new people, this is a very tough treatment. Everyone responds differently, you will make it and the treatment will end. To me words cannot describe the ordeal. the best and simple advice is "one day at a time". Try not to project too far into the treatment. Somehow, as humans, we find a way to overcome tremendous obstacles and heal. I mean, 3 weeks ago, I was on the ground and barely cared what my name was, today I feel 500% better. My mouth is dry but getting better, taste is comming back slowly, and I can work without having to take a nap, and I don't have to sleep till noon. Unfortunately, fear and worry are part of the treatment and recovery, to me the worst part. Remember, the tough times will end and your new life begins. Hang in there and be well. Alex.

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

thanks for the words of encouragement. just waiting for the big guy to turn the corner for the better.....

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Congrats, Alex! There are still some obstacles to overcome, a number of scans and such over the next few years, for example, (along with the associated worry that you recognize already) but it sounds as though you have weathered the most difficult part of this with flying colors!

Again, congratulations!

Take care,

Joe

Dazey
Posts: 86
Joined: Sep 2009

Glad to hear your news. We started this path at the same time and ended it too! It is sooo good to be done. No matter what comes up, you can do it. Dazey

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Landranger25
Posts: 207
Joined: Nov 2009

Keep it up Alex. I am now 7 weeks out form 33 rad and 3 chemos. PEG gone 2 weeks ago. Like you I am amazed that I could go from feeling so bad to feeling so good. The ability to eat real food helped a bunch and back to work and regular activities a key as well. Lots of stretching of the jaw, neck and shoulders everyday as well as walking and ice hockey with my daughter. Trying to return to normal as much as possible. PET scan coming up in couple weeks and looking forward to positive result there as well. Stay positive with your recovery!

Mike

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

I was doing great post treatment, eating, exercising, generally feeling good but had a neck disection on Monday which has set me back a litttle in the energy department and eating ability although not to bad, I remember when you started and wish you the best from this point on. I've fallen behind you in the race again. I'll catch up soon.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Alex- 8 months after treatment of 34 rads (last 3 were partials) and too much chemo, and doing great- you'll get there, and beyond. congratulations. took me about 6 months to gain back all my weight, but that goes with eating ability, and keeping the calories coming in. sounds like you're doing great. and the "one day at a time" is exactly the right approach, and one that is still with me. very good advice for everyone.
AND FOR EVERYONE GOING THRU TREATMENT- alex, hondo, ratface, delnative, landranger,dazey, stash, Joe,and all of us who are active in this forum- WE ARE PROOF YOU CAN GET THRU IT TO ALL, NO MATTER HOW DIFFICULT IT MAY BECOME, BECAUSE WE HAVE BEEN THERE, TOO, AND WE ARE STILL HERE AND DOING OKAY. A GOOD AND LIVEABLE END TO THE TREATMENTS CAN, AND WILL, BE HAD BY YOU. We are proof of that fact. Believe you can, and thus you can, and will.

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

Now, this is why God must of directed me to this website! I'm not a Bible thumper, but Now I know there is a God!! lol! Every time I come on this froum and read everyone's story, it uplifts me! Thank you!

P.S. I go for my 1st follow up, with my Oncologist this Monday. I hear it'll be the scope down the nose? Can anyone tell me what else he will do on the 1st appt.?

Cindy

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Yes, Cindy, about God, and that of the Spiritual realm. I am not a Bible thumper, either; but, rather, of the unorthodox in regards to Jesus, and God, as I have sought, rather than be complacent with what I am told is true, and do believe in. There may be something to what one of ancient times taught in regards to every Soul's connection to God, and Jesus, without all the red tape and trappings of religion for the masses. Imagine a plane with only two upon it- your Soul, and the presence of God. Believe...

The first visit was nothing more than routine, for me. Should not be a cause for anxiety. They will assume everything is as was expected, and it will be. What you must go with is what you know of from what you are experiencing with your body. If there is cause for concern, in your mind, then tell them about it. But realize, only you know what's really what with you, and your body has been dealt a bigtime right hook with the treatment; and, thus, your body is still trying to get a grip on the aftermath of that punch. Were I you, if my Oto were to give me cause for concern, then I would put my Oto under analysis in the name of motivation for his/her opinion. My first post-treatment PS showed something under my tongue, but my Oto is not concerned about it- where it showed is a place for typical false-positives, according to him, and that opinion gained him foundational place. And he is directly linked to the University of Iowa, which claims to be the 2nd-best in America, when it comes to head and neck.
kcass

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

My first post-treatment visit consisted of the radiation doc scoping my throat (through the nose, of course) and my ENT looking down my throat, holding my tongue and asking me to say "EEEE" (which you can't do when someone's holding your tongue) and feeling my lymph nodes.
As for there being a God, I'm not generally too outgoing about my faith -- I have too much of the reticent Scotsman in my DNA for that.
However, the coolest thing happened last week when I went back to Johns Hopkins for my PET scan. I was running late, and when I arrived on the campus I wasn't sure where the PET scan building was located.
I said a silent prayer, asking God for help in finding the right place. I then spotted a security guard sitting in a little outdoor booth. I gave him the address, and just as he was trying to point me in the right direction, a lady came up behind me and said, "I'll take you there." Turns out she's an employee, and she took me in through an employee entrance, down through tunnels and passageways and other places that the public never sees. And I got to the registration desk with one minute to spare.

--Jim in Delaware

Dazey
Posts: 86
Joined: Sep 2009

I had my first check up two weeks ago. Prior to the visit I had a cat scan. The radiation doctor said I was too swollen and inflamed for him to do a scope and I had mucositis. I was happy to actually hear him say that, it validated my pain and my issues with mucous. However, he also said "your cat scan is perfectly normal, you have to have patience to heal - it will take a long time." His parting words were to have a happy holiday and he will see me in three months. We have all heard from many on this site that we are all different. So true; this was my experience with the first check - up. The doctor was reassuring and I keep reminding myself of his words - especially as I still struggle with the mucous and pain with swallowing. It WILL get better! Dazey

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Alex

Glad to hear your good news

Stay strong

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

Alex said, " Remember, the tough times will end and your new life begins. Hang in there and be well." Boy is that the truth!!

This site has had great import in my recent recovery!! Thanks all! I wish I would have come to the board sooner.

jdeh@comcast.net
Posts: 2
Joined: Dec 2009

Hi everyone! I'm new here and it's great to see all the useful info you guys have contributed.

I finished treatments of radiation and Erbitux on Sep 25th 2009(not sure how many of each but approx 7 weeks (erbitux once a week and radiation 5 x week).

Dry mouth is really bad and wakes me up several times at night so I end up sleeping a lot the next day to compensate.

My taste buds got fried and food tastes terrible and all food smells really awful as well. So I still am relying 100% on the PEG tube since eating tastes and smells so bad. If this continues I would have to force myself to eat food that tastes really bad in order to get rid of the PEG> My daughetr keeps trying to get me to try different foods but they all taste and smell terrible.

I cannot imagine having this not get better but the possibility really scares me not to be able to eat or smell normally and to have an ongoing dry mouth problem.

Jeff

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

It'll all come back. Just takes time. I've have my PEG since January, and know I will have it at least until next March. I have gained all my weight back, and still drink at least one Ensure/day. Trial and error with the real food. Salads with different dressings might be a good place to start. I am addicted to chef-types w/French dressing. 8 months after the last rad, dry mouth and foam saliva are still with me, but Biotene does help. Just keep the calories coming in. The taste will come back. Believe, and it will. As for the dry mouth- all that really matters, Jeff, is that you are still alive, and that ain't gonna change for quite some time. We have all been where you are, and we still are alive.
kcass

pk's picture
pk
Posts: 192
Joined: Aug 2009

Yeah for you!!!! You finished and are going forward. It's a frustrating process - this recovery thing. My husband is about 9 weeks out and is doing very well. Eats and does just a little supplementing with Boost to keep the calories and weight up. He has alot more energy and does not nap anymore. He even went pheasant hunting in SD last week for days. This is sooooooo encouraging!!! Life is going on. Yahoo!!!! PK

faithheals09
Posts: 19
Joined: Dec 2009

Congratulations! There is hope!! It has been one week since I completed Radiation treatments (6 weeks) and I have to say that I do feel better every day!! I do have the tube because I still do not have my taste buds back completely, but I am hopeful they will come back soon because there are a few foods I can taste just a little of....so that is encouraging for me. I will definitely try salads with different dressings to see if I can tolerate any of them. I am going back to work next week and I couldn't be happier. Thanks for your posting, you have no idea how much it has meant to me.

God Bless.

faithheals09
Posts: 19
Joined: Dec 2009

Congratulations! There is hope!! It has been one week since I completed Radiation treatments (6 weeks) and I have to say that I do feel better every day!! I do have the tube because I still do not have my taste buds back completely, but I am hopeful they will come back soon because there are a few foods I can taste just a little of....so that is encouraging for me. I will definitely try salads with different dressings to see if I can tolerate any of them. I am going back to work next week and I couldn't be happier. Thanks for your posting, you have no idea how much it has meant to me.

God Bless.

RockyJim
Posts: 4
Joined: Dec 2009

Words of hope and encouragement -- good luck!

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Glad to have you here with us on CSN, this is a great place to get support and answers to questions you don’t understand about your Cancer.

Take care and God bless

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Just wondering how you were doing it has been a while since your last post, I hope and pray that everything is OK with you my friend.

klortie
Posts: 13
Joined: Jan 2010

Thanks for the update. This is heartening for me as I was just diagnosed Dec. 23rd (Merry Christmas!)and it's all new to me and I'm a bit scared. Thanks for letting those of us just getting started that there is light at the end of the tunnel.
I haven't started the Chemo/rad yet (Jan 18th) but have had 4 surgeries in the past 3 weeks and already feel like I've been hit by a truck.
Thanks again.
Ken

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Welcome to CSN I am glad to have you here with us. Sorry to hear the news about your having cancer but you have came to the right place. We are all very close here as we have all been through or just going through cancer treatment. You will need a lot of support when your treatment starts so please plan to stay and keep us up-dated on your progress. In the mean time this is the place to ask questions you have on your mind, we are all here to help. I don’t know how you are on prayer or faith, if you like I will add you to my prayer list.

Thanks care my friend

klortie
Posts: 13
Joined: Jan 2010

Hi Hondo:
Thanks so much for the offer and yes, please add me to your prayer list. I believe faith and positive thinking are going to help me navigate this scary road!
And thanks for just being there and willing to share with newcomers like myself.
Ken

pk's picture
pk
Posts: 192
Joined: Aug 2009

You are here with many survivors and spouses of those who are surviving. My hub sent thru chemo and rads - ended Sept. 28th - no surgery - had his 3 month post treatment PET scan last week and he got the best news you could ever want to hear - no cancer anywhere in his body!!! Keep posting as the people here are just awesome and so supportive and caring.
PK

klortie
Posts: 13
Joined: Jan 2010

Thanks for the encouragement. I've been reading and I never knew there were so many folks out there who are going through this (and much, much worse!).
I'm wondering if my story is similar to others. I had surgery Dec. 18th to remove a mass from the left side of my neck which came back positive for Squamous cell carcinoma. Since then, I had the PET scan which didn't reveal the primary. I was fitted for the rad mask and was scanned, then met with the chemo doc who recommended I have the porta-cath and PEG installed. This was both done last Tuesday. On Wednesday, my tonsils were removed. Today I spoke with the surgeon who indicated that neither the tonsils or other biopsied areas, adenoids, endopharynx, base of tongue, showed signs! I still have a similar sized mass on the right side, but apparently they cannot locate the primary. I've read that this is quite common?
So, now because me anatomy has changed (removal of tonsils) they want to re-make the mask and re-scan and the chemo/radiation has been pushed back to Jan 20th.
Given what others have gone through, this may be common, but as I've said, this is all very new to me and I'm a little scared.
But it helps to read all of your stories and realize that there is hope and support out there.
Thank you all for sharing and I'm sure this network will help educate and calm me down the road. I will have many questions as this progresses.
Thank you all again.
Ken

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

Hi there! And welcome! I don't know as much as a lot of people here, but if I can help, in any way, I will try:) What I DO know, is it is a very scary place to be in life. But I also know that you can do it. Have faith and keep positive. Even if you feel you have slipped back a bit at times. You just go forward again:)

Cindy

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