Hi All

Just joined this great group, hoping to cope being a CG to someone we loved. Its a great deal for us to show our positive sides to the affected one even we are falling apart ourselves,hands being tied couldn't share the pain they are going through.

I hope I can get some motivation, inspiration going through this.

There are so so many caring hearts and well-informed members on this site! They have gotten me through the initial shock and anxious moments. I've come back in today -- end of week four -- and will seek information that will help me manage and prepare for the next few weeks. It's getting tough, but these guys have done it and they know what it takes. I feel very supported here both emotionally and with proper information. You have definitely found a great place for an awful event!

Being a caregiver is tough. It's part of what has me here today but you will find several caring hearts from that perspective as well. I promise you, you will get through it! I am weak and very tender-hearted but am beginning to see the light at the end.

Blessings, hugs and strength to you and your loved one!

ALZ, welcome to OCF. There are many caregivers here who can offer you guidance. One thing important is to make some time for yourself every single day. You have so much going on and you need some alone time just to recharge. Take a walk around the block to help clear your head. It takes a very special person to be a caregiver.

We would be lost without our caregivers. Welcome, ALZ. Please be good to yourself. I wish the best possible outcome and road to recovery for you and your loved one.

Kerri

Welcome and sorry you had to find us but we are here!!! OCF helped me get thru the rough spots also. It's just like life if you have a loved one ill, it's just another day, it is always "one day at a time" and that is how I live by that, don't think bout what tomorrow will be like, live with what today has brought. Good Luck and read postings and it will help!

Hi,
You are definitely at the right place. I didn't find the site until the end of our radiation. By then it was just awful and I needed to know that was normal. It was and I was so relieved. It was very hard to watch Kevin go through it, but just knowing it WOULD get better made it easier to endure.
The hardest weeks are the last one of radiation and the next few after you're finished. I have posted before that one of the things that surprised us was how bad the burns were on the outside of Kevin's neck. The entire right side was just raw. We treated it a couple times a day with Silvadene cream and within 10 days or so the majority was healed. We bandaged it and put a wrap around to hold the bandage on because tape was right out. The wrap was given to us by the RO nurse. It made it easier to wear shirts because it kept them from rubbing.
Not sure what he is eating, but scrambled eggs and Ensure were an every day occurence. There were a couple of days when nothing would go down so he used the Peg a bit, but he really hated it so pushed himself to drink the Ensure. He would take pain meds and drink quickly. The Lortab worked fast so was ideal for eating.
There were so many days I would get in the shower and cry. It seemed all my good friends just disappeared when we were diagnosed so it was a lonely place. His family was somewhat supportive, but only wanted to hear the happy things so I couldn't vent there. Our MO and RO nurses were a wonderful support as well as the social worker at our center. They just let me weep or gripe or whatever with no judgement. That's what we need. A soft place to fall.
Then I met everyone on here and it was such a HUGE relief!!
We are here for you. Please know we understand. Kevin and I just completed tx at the end of October, so it's pretty fresh.
Blessings to you on the rest of your journey.
Kathy

First of all i am really touched and glad to see the welcome notes! It made me smile n feeling warm to know theres actually people who really cares!
Me and my 14 years partner went through hell since July last year. As we are young and dont really know how to handle this kinda situation but i am proud enough to say i brought her through the worst phase of the treatment. And myself as well ofcourse. Never know all my 30 years of life that this is the most toughest battle anyone could be in.
As being this young, i need to show the doctors that hey im not a kid but i know stuff too. So i did a lot of readings n research everytime we need to see doctor.
Sometimes the emotion is too overwhelmed.. Ending up i took one tablet of xanax which supposedly belonged to my partner. But it helped! Wont do it again tho. Having this great support group now, makes me relief n knowing i am not alone!


Love u guys
Al

Hi Al - I am so-o-o glad you found us! It's the best place to be for the latest information, research, and good practical suggestions from people who have been where you are! I found OCF just after my son started radiation 5 years ago and he is doing just great now! Check out the information on the main page and come back here often. When you get a chance, you might give us a little more information about your partner and include it in your signature line (see mine below). To do that just go to the top of this page where it says "My Stuff" -click on "Profile" and scroll down to the very bottom of the page. In the signature box, include whatever you like re your partner's treatment. There is a thread on the main OCF page for abbreviations or you can go to:
http://web.utk.edu/~aalix/abbreviations.html
for an alphabetized list of abbreviations i put together from the ones I found on this site. Come back here often and let us know what is happening.

Hello and welcome... It's a great group here with a massive amount of combined experience - sorry you have to be here but we're here to listen, support and inform. Take care!

ALZ,
All I can do is say the same thing others have been saying-welcome and glad you found us. This is the greatest group of people that you can imagine. You caregivers are very special.

Thanks all.
We did biopsy today, waiting anxiously for the result, hoping it is ok.. we have 2 different doctors treating us, one is head and neck surgeon who helps us in the pain management thingy during IMRT (ulcers are unbearable) and the oncologist who did the the radiation treatment.
So now the story is oncologist wants to do chemotherapy without knowing what is that bump is (even though he is going to do CT Scan in March). During our regular check up with the surgeon today, he made on table decision to perform biopsy and send it to the lab. So here we are now waiting for the results.

Hi Al - It sounds like the surgeon is on top of things and being very careful with doing the biopsy, which is the only way to tell for sure what a bump or a lump really is. And it's been said before here that "sometimes a lump is just a lump" - so until the results come back, try to keep busy. The waiting for any kind of results is so difficult and it better if you can keep busy and distract yourself with other things. Now would be a good time for you and Ida to get all your questions ready (like the chemotherapy you were wondering about) for when you see the doctor again - or any questions you want to ask here. Hope everything goes well with the biopsy results. I will keep my fingers crossed, too!

Hi there it sounds like your dr is being proactive which in my eyes is a very good thing... For me I'm not into wait a few months and see - because if it is a recurrence a few months is a very long time. That only gives the tumor time to take hold, grow and spread. I would not have a major surgery based on an unknown but a round of chemo might be something I would do. In my own opinion though unpleasant and not something we willingly commit ourselves to, has benefits that outweigh the cons, and most importanly have very few long term , or permanent effects. Good lck - hopefully the lump is just a lump.



****ADMIN UPDATE**** It is NOT standard procedure to give even just one dose of chemo until testing is concluded to determine exactly what the diagnosis is. One dose of chemo can cause the same side effects as the full course. Permanent and enduring side effects include hair loss, neutropenia, kidney failure, cardiac arrest, mucositis, peripheral neuropathy, hearing loss, cognitive dysfunction - depending on the type of chemo used. Whilst hearing loss may not be so bad with one dose of cisplatin a few of the other side effects can happen immediately and can also be fatal.
****DISCLAIMER****Remember that advice given by someone other than your own doctor should never take precedent over the recommendations of your own care givers, and that the opinions expressed here are those of the individuals posting them, and do not necessarily reflect the ideas of the Oral Cancer Foundation.

ALZ - ((welcome)) and know that we are here for you. I never expected that I'd be a CG in my early thirties either. I was in no way prepared for what was to come, but I too found this forum to be my lighthouse in the storm.

Don't feel intimidated by the doctors. Ask your questions, state your opinions, and stand up for your partner. I know that sometimes my husband needs me to advocate when he is too overwhelmed. At the beginning it seemed like big shoes to fill, but you can do it.

- Christine

Oh gosh....I'm so so devastated today to know the biopsy result...and it's via what's app for god sake due I can't be at the hospital because of work. And it made me nearly fell on the ground even I was in a business meetings that needs my input..he'll it was sooooo hard for me to wait till I finished work and business dinner just to breakdown and cry!!...so now what......I thought at least we got a break to breathe...build up immune system...but no no it had to come right back at the same freaking place....oh gosh I am soooooo mad now...so down...so nervous...don't know what's gonna happen next?...surgery? Chemo? I know it's not me...but I am feeling it the most and breaking into pieces now........................I need Xanax.....

Hi there - sorry for the recurrence - chemo may help but I imagine surgery should be the next step. Did they do a neck dissection previously? And where is the lump? Good luck... Sorry you're going through this again... Saying prayers!

The bump was found on the tongue floor...I can't imagine surgery..we never been thru that yet....I'm just falling into pieces thinking what my baby gone through and again going through it....ah damn it...I've never been a why person...always how..now I'm asking god...whyyyyy again!! Sorry guys...just venting out here

Vent away. We are here for both of you. It does suck and you have every right to ask why and be angry. It would not be normal if you didn't feel this way.
When the raging passes you will both buckle your seatbelts and get on with the ride again. YOU can do this. Both of you.
Please keep us informed and know we are here to help you through. Vent, yell, cry...we are here.
Love to you both,
Kathy

This place is for support for both the patient and caregiver. Its ok to vent! Im sure you are very upset by the recurrence. Its a terrible shock getting that dreaded news.

I know you are worried and upset but try to think calmly about his advantages this time over the first round. This time around he knows all the terminology. He already has all the doctors lined up. A second opinion is still a good idea. For my 2nd round of OC, I had just surgery to remove the tumor. Usually a recurrence is found much earlier than the first bout of cancer so its easier to cure.

Best wishes with everything!

Thanking god that the bosses (mine and Ida's) were very understanding and supportive.

Thanking god we found this site and met with you awesome people... I cant thank much.. being someone who is considered online almost all my life.. a place like this really gives me strength... and to strategize what needs to be done next...

My god the surgeon suddenly act up like an asss..just because i was very busy yesterday to see him...he fwded all our documents to the oncologist to go thru chemo not even wanting to talk to us or discuss about surgery option.

updates from us... we are going through chemo option. That's what both surgeon and oncologist suggested. Why? Its to retain quality of life.

So chemo starting 21st of March for 6 shots, once every month, 2 types of drugs which I did not get the names earlier.

ALZ,

I didn't have Chemo but from reading people on here I never heard of 6 shots once a month for Chemo.

Why didn't your Surgeon do surgery first? I don't understand seeing that's the way I think it's done here with Tongue Cancer. Biopsy, CT/PET Scan, surgery and if the lymph nodes are involved then Radiation and Chemo, that's my understanding.

I think it's time for a second opinion at a Cancer Center.

Hope all goes well for you.
Connie

Is the tumor able to be surgically removed?

HI Alz

Just to get some clarity around this:

Does this mean that your partner will be having 2 types of chemo every month for 6 months?

Or might it be that you are getting 6 chemos, 2 at a time which means you would be doing 3 rounds or cycles of chemo over 3 months?

Our doctor drew our treatment plan as a picture as we did not understand her terminology or the process. This helped us a lot and over time we learned the time between the doses of chemo was called a cycle. So we had 3 cycles with 3 types of chemo administered each time. Our cycles were 3 weeks long so the total time undergoing chemo was 9 weeks
Good luck

Hi all

We are seeing another doctor for second opinion.. Yes surgery is the way we see it now.. Too bad we were confused since it started.. Pushed to wrong direction.. Now sitting at the hospital waiting for Ida doing MRI scan.. Moving forward to PET scan on wed and meeting another surgeon. Fix date for surgery... We need to make the right decission this time... Chemo is definately not the answer.... I dont know why the surgeon who diagnosed pushed us away.. His reason was quality of life.. But we want to cure while its still not spread... Hmmm.. Its been tiring..

Al - So glad you are getting a second opinion! Hope things go a LOT better for Ida and you.

MRI done, confirmed its just a localized tumor 1.9cm, no nodes affected (thanks to radiation). We are meeting the surgeon tomorrow for his planning. Thank god we met second doctor.. or else we will be kept in dark again with chemo and it keeps coming back worst.

Wish us luck.. we need to get this right.

Hugs to all...been a tiring day

Sounds to be a much better prognosis than originally thought. It also sounds like she is in very good capable hands. See what a difference a doctor can make! Let us know when surgery is scheduled for. Best wishes with everything you both are facing!

Welcome. Hope all is going well. I found this site very valuable when I was going through treatment. I got and still get (though I go on less) lots of good advice, sometimes for practical stuff and sometimes for the emotional. -Michelle

Hi there ... Good luck let us know what happens!