Don had his biopsy this morning. They said his airway was almost swollen shut. They had to put his trach tube back in And we're having to stay a few days! Has anyone experienced this?
thanks,
Callie

Wow... no... sounds like a reaction to something. Good luck... someone else may have input... take care.

How is he tonight? What a wierd thing. Keep us posted!!

Just very tired. We all were very shocked. The doctors said they couldn't even see his vocal cords. still don't have any answers. Waiting on biopsy results and CT results from today. We're at UAB hospital. He looks like he feels miserable.

It sounds miserable for you both. Thoughts and prayers with you, Callie.

Thank you very much!!! It feels like we're back at step one !

Hi Callie,
It's been a few days. How are things?
Kathy

Still in hospital. Has to be suctioned out a lot doesn't have the strength to cough anything up. He's been having hot flashes, so the temp is set on 60 and I have three blankets. Lol. One side of his jaw is severely swollen. The doc said it's from radiation, but it didn't even look like that until after the biopsy, so I'm not sure about that. It's a little scary I pray it's only from the biopsy. Still don't have results from biopsy, but full body CT came back negative! Praise God for that!! We should have biopsy by Tuesday. Still no answers for his throat swelling. Doctor said he started struggling to breath towards end of biopsy. Kind of makes me think he had some sort of reaction to the anesthesia, but I'm not a doctor, so we'll see what they come up with.

Callie

Hi there. It very much sounds like an allergic reaction! the throat swelling, the jaw part sounds like an infection which is very possible - any time you cut into the skin you open yourself up to infection - radiated skin takes a lot longer to heal particularly if radiation was fairly recent, and because if this there is more chance of infection as well. Also the hot and cold flashes are another indication of infection (unless he's having a problem with any meds) do ask about the possibility of a localized infection. Hugs and tell him to get well soon! Oh and the ct sounds great! Hope it's indicative of the biopsy results....

Another doctor came in and said that Don's throat was pretty tight before they put him under, and by the end of surgery they had to put the trach in because it was almost all the way closed up. Which means for the last 3 weeks( the last time he had a scope ran ) his airway has been slowly closing up. But for what reason ? Nothing in his diet or medicines has changed for the last 7 months!!

The jaw they said it's not infection due to the fact he's not running fevers. The doctor said if it was infected he wouldn't be able to stand someone pushing on it. She said the swelling should gradually start going down from this point on. Well we're staying another night as well. First we had troubles with our insurance company paying for a suction machine, then they only allowed us companies that wouldn't do service calls in our area. last the delivery guy didn't show up yesterday with the machine and they can't get a hold of anyone today, so tomorrow we can go home.thanks to everyone for replying to me!!

Have they tested his TSH? The hot flashes may be due to thyroid damage. My thyroid crapped out appx 4 months post Tx and I was either very hot or very cold and I was especially tired.

Hi, Callie
I don't have a clue as to what's going on, but just wanted to send my best wishes. I hate to see such a young person go through this.

Well Don's biopsy came back. He has cancer in the base of his tongue and voice box. The doctor said he has two options, first major surgery, remove rest of tongue, voicebox, and he'll have a permanent trach. That only giving him a 25 % chance of it not coming back. He'll never be able to speak again. The second option, radiation again, which would be even more brutal, chemo, combination of both or some clinical trials. Which would only be a 5 % chance of shrinking the tumor and it would possibly extend his life for a year. If he chose neither, he might have a year left, give or take. We have a six year old and a one year old. I don't know what to do. I've been crying all day, my face is raw from rubbing it! I can't eat or drink anything without getting sick! I don't think I've ever felt this much pain! please someone give me some advice or hope...

Thanks,
Callie

Callie, I am VERY sorry!!!! Please run to the nearest major cancer center!!! That could make all the difference in the outcome.

Cancer Centers

Callie, I did not want to sign off without answering you as there are not too many members on here tonight.

I am so very sorry about this latest news and I know you must be devastated...so worried and feel the weight of the world on your shoulders.

Christine gives great advice..make sure you are seen at a Comprehensive Cancer Center Head and Neck Clinic as soon as possible. They may have ideas how to attack this recurrence since they see this cancer every day.

I am sure lots of folks will answer you in the morning. Please know that all of us send hugs and strength to you right now.

Deb

Callie-
There are no words. This kind of shock is numbing. I'll pray for your family. I'm so sorry you're going thru this. Ive been where you are. In 2007, 2009 and 2010. When you get to the point that you seek assistance from this forum, I hope that I am able to help you. In this instance, my signature would be that of 'caregiver'; in general, as the cancers are different. But I've been there and my heart breaks for you right now. I hope you have others in your life to help.
Hang on tight and ask for help.
-Wendy

Callie I have been there and totally feel your pain and sadness! Whatever is decided live each moment with eachother and your kids and make wonderful memories. This is true no matter how much time anyone has left. I am sending you strength to get through.

I am so sorry, Callie for this latest news on the biopsy. Definitely get to a Comprehensive Cancer Center. Lots of people on here have had 2nd and 3rd opinions which have varied quite a bit from the original so it's well worth getting another doctor's take on it. Is there someone close by that can go with you to help in remembering what was said or recommended? Do you have family or a friend that can come over and just give you a hug? If you can share what's happening with someone, it can make it a little easier for you. Please stay close and let us know what is happening.

Hi Callie,
As many have said, I'm so sorry you are going through this. There really are no words that any of us can say that will help ease your fear or pain, but please know that we are here for you. We will remember your family in our nightly prayers. Please keep in touch as you can.
Again, so sorry. I am crying with you my sister.
Blessings,
Kathy

He was treated at UAB comprehensive cancer center. I wish I could stop crying so I could think straight! His family is all from Pennsylvania so it's been hard to be close with them. They've supported us with constant prayer and text messages. My eyes burn from crying so much. I can't sleepeither! I just keep watching him breath! Every time I look at my little girl I start crying. I can't imagine her not getting to know her wonderful daddy. Have a voicemail saved from Don from a year ago today, he was telling me if loved me and stuff. I listen to it all the time. Thank you for all your replies.

Callie

Callie, I know what you are going thru and how difficult it is. I am so sorry!!! Please try to calm down. This isnt helpful to you, your husband or your children. Its time to get a game plan going. How about trying out a different cancer center? If your spouse is from PA, there are several there.

Maybe it would be a good idea to make some tapes of your husband with the kids. This way they will always have them to watch.

There are many caregivers who have a hard time dealing with everything their patient goes thru. Many see a therapist and/or take anxiety meds to help take the edge off. I know you have just been given some shocking news and its such a difficult thing to comprehend all at once. It might not be a bad idea to seek out someone to help you. Many cancer centers have counselors who will help the whole family. Please look into it. Everyone needs you to be ok. Please dont forget to take care of yourself too.

(((HUGS)))

Callie,
I have been exactly where you are. In Feb. we were told that the tumour at Kris's Base of tongue was back and extending down into his larynx. Our only option was the total glossectomy and total laryngectomy. I was terrified. I also cried and cried. I took sleeping pills, sometimes 2 in order to sleep. I grieved for both Kris and myself. The thought of never hearing his voice again was devastating. We were told that he would be dead within the year without this surgery. This was his only option.
So 2 weeks later Kris had the surgery and 4 weeks after this he came home. He has gone from strength to strength. It has not been an easy journey for either of us, but I love him to bits and fight for him and encourage him constantly.
He communicates at this stage using an IPad and the speakit app. It is slow but okay.
He has mastered the art of swallowing and drinks all his Fortisip plus other drinks. At this stage he refuses to try anything thicker than thin fluids. We use the PEG for medications only.
We have both learnt and adapted to cope with the permanent trache. Yes it is quite disconcerting to begin with . This is all about adapting to what life has thrown in our path.
You can do this. I am also a believer in strong family love helping Kris to get through..
We were told that this surgery was our only option for life.
Would we take this option again? You bet. I also would recommend you record your husbands voice. He will get another voice eventually as laryngectomees do learn alternative methods of speech, but do record his current voice. I miss Kris's voice.
I suggest you talk to your family Dr and ask for some help to get you through this acute stage. You will get through it. Please email or pm me if you want. I am always here for you. Thinking of you and your family, sending you strength and strong positive thoughts. Don't borrow sorrow from tomorrow.
Tammy

Thank you both! I haven't heard his voice in awhile. He was barely understandable before radiation, but since he hasn't talked. I'm just afraid if we take the time to get an appointment and meet with new doctors it will be to late. I've had to suction his trach and mouth out almost before every hour tonight. He seems so much more weak than he already was. For the past almost two months he has been having hot flashes. Just now he had beads of sweat all over is face and head. I've asked the doctor about thyroid he said they don't check for that til 6 months out of treatment. I just feel like he is giving up already. I told him I would rather have his new self than not at all. I hate seeing him like this! If this stupid mucus would disappear, he would probably have more strength and rest.

Callie

Tammy did Kris's doctors tell you that there was only 25% chance of it NOT coming back? This just doesn't sound right to me...
Callie

Callie, My heart aches for you and your family. I wish I had more help to offer you. I agree with getting a 2nd opinion. Start reaching out by phone if you can to MD Anderson or Hopkins. When my mom was diagnosed with pancreatic cancer we took her to Johns Hopkins in Baltimore, MD. They have an entire cancer center to help the entire family physically, spiritually and emotionally. This totally sucks and I wish there was something I could do to help. I will keep all of you in my prayers. This just sucks! As a caregiver we have to step up and fight for our loved one when they just don't seem to have the strength. Hugs, Wanda

I'm so sorry to hear about you and your husband's struggles. I wish I had some words of wisdom for you. Just know that you have a lot of people here to support you... I will be thinking of you and your family and sending love and positivity your way.

Callie - You will feel better if you can just start taking steps towards a second opinion. If you feel that even making a phone call to another cancer center is so painful, then ask someone to make that phone call for you and for your husband! When my son was first diagnosed, I cried so much I could not be coherent on the phone. I had to ask someone to do it for me when I needed to get an earlier appointment for him. About that "25% chance of the cancer not coming back", seems to me that ANY chance at all at removing the cancer is better than NO chance. Whatever happens with the 2nd opinion or 3rd, if need be, you will be glad you did everything possible to fight this horrible disease! Also please get some help for you so that you will be able to function for your husband. You can do it!

Hi there - everyone here has given you good advice. A second opinion is a good idea at a different ccc, as for choices... I'd definitely do the surgery - its a numbers game but 25% still beats 5%, or 0% - and they can wave numbers at you all they want they don't know. Hugs... I'm sorry about the outcome of the biopsy, hugs and prayers to you!

Callie,
Kris's team did not tell us the odds and we did not ask. They just told us that this was the only way to attempt a cure. So at least his tumour was still curable. They were not talking palliative care. Radiation to the same site was not an option.
In this land of free health care we then opted to have the surgery done privately. There was a 6 week wait in the public system which was unacceptable to us. Honestly Callie , I would get this done ASAP.
Evn at our follow ups post surgery there has been no mention of time frames and survival. Just that this option is only offered to those they think will do well.
Take one day at a time. You will get through this.
Tammy

Callie,

My heart breaks for you, your husband, and your children. It's so hard not to cry in front of them and they probably can't comprehend the extent of what is happening to their Dad. I know you have a lot on your plate...way too much. Maybe you can get help from any family that is nearby or friends to take the kids for a while so you can get things in order and have an all-out screaming-crying-swearing fit if need be. I know you mentioned that Don's family isn't nearby. Has anyone offered to come down to help you out? Call on people for favors. They often want to help, but sometimes need to be given specific tasks to do. Just tell them what you need, no matter how big or small and someone will likely come through.

I wish for you the strength to get through each hour or each day and just do the next right thing...one foot in front of the other. I wish the same for Don, who must be terrified!

Here's to hoping for a cure and getting on the way to a new normal life where you can all live as a loving family. Life is NOT fair and I think that some of us get dealt a really crappy hand. I will never understand it, as many of us won't.

You and your family will be in my thoughts. Please keep us posted as you are able.

Big hugs to you and the kids!
Kerri

Callie,
while your doctors can't offer certainty, they would not be suggesting the surgery if there wasn't a reasonable shot it will work.

If you and Don are comfortable with the doctors, the UAB CCC looks like a very good place for treatment. It is an NCI designated Comprehensive Cancer Care Center - and only the best of the best have that designation. As others have said, a second opinion is always good, but if you do not opt for it, you are in a good place now.

As other have suggested, call in all your favors for support for yourself and help with your kids. Someday you will pay their help forward with kindness to others in trouble and distress.
Maria

His mom and dad are coming down to help! Thank God!! If he goes through with the surgery I'm asking them all to come down! I know I can't do this alone again. I've installed the talk to me app on his phone, but he won't use it. I was at the pharmacy today and the lady asked me how Don was doing and I just burst into tears and couldn't speak! So humiliating. Oh well I'm sure there's more to come. I can feel the tears trying to bust out constantly and my voice is consistently shaky when talking about anything. I was finally able to eat a little this afternoon. This mucus that keeps coming out of his trach is non stop! I feel so sorry for him having to constantly suffer through that. I pray it goes away soon. I know Don's glad his parents are coming down, but he hates them to see him like this. It was so odd, his mom asked me Monday before the results if he would care if they came down. He told me to tell them to wait until he's feeling better and able to speak to them. Then the results came and he won't be able to ever speak again with his voice. So sad! But I don't care how we have to communicate as long as he's here! We've been communicating differently for months anyway! He did tell me he would like a second opinion

But he hasn't told me what option he's leaning more towards. Well thanks for listening to me guys! You are all so inspirational!!
Callie

Ok, then go for the second opinion ASAP - don't worry about which option until you get it. That is something concrete that you can do. I am going to put in a plug for Dana Farber up in Boston for the second opinion. Remember, you and Don don't have to trapse up there, just his medical records. Second opinions happen all the time - no insult to the doctor in any way, shape or form.

Omg, thank you!! I did not know that, I thought the patient had to be present.
Callie

That's great to know Maria. I didn't know that either.
Praying for you guys Callie. You are on my heart constantly.
Will continue to stand with you in your battle.
Blessings,
Kathy

Dear, Callie.

My surgical oncologist/ENT is the Director of Head and Neck Surgical Oncology & Director of Normal Knight Center for Hyperbaric Medicine. He is at Massachusetts Eye and Ear Infirmary, 243 Charles Street, Boston, MA 02114. 617-573-4100

He is among the best of the best. He is a fabulous doctor and person! He also has privileges at Mass General. He is a full Harvard Professor for their School of Medicine. I know that there are some doctors from Dana Farber that will refer to only him for difficult cases.

I know he will be out of town the last week of July and first week of August.

Daniel Deschler, MD

I wish you the best of luck. Please send me a private message if I can be of any assistance at all! I will give you you my phone number if you would like.

Take care,
Kerri

Oh Callie - I'm so glad to hear that Don's Mom and Dad are coming down. It will be such a help to have them close. I'm sure they must be so worried and want to be able to do something to help you and the children. When you get a chance, you could make a list of some of the most pressing needs - like trips to the pharmacy for meds or doing something with the children, laundry, meal prep. etc. If anyone asks you or your parents if there is anything they can do, they could be shown the list and they can choose for themselves which they feel most comfortable doing. Keeping busy will help them, too. I'm so glad you were able to eat something - it's important to keep up your strength. You've been doing so much and you need to take care of you, too. Let us know what happens with the second opinion. Sending big hugs to you and your family.

Callie

There is still hope since the major surgery could work and Don could be in that 25%. We have a poster on the OCF forum who also lost his voice box yet he (dribrook) is giving a speech at the OCF walk in New Jersey this September. It's not that Don can never speak again, others without voicebox use various devices. Here is a link to one of his posts which has his blog on not only surviving that type of surgery but thriving Dr brooks post


25% sounds better than 5%, but remember for each one of us, the odds are always 100% or Zero. It's only in the aggregate that those statistics apply. So there is hope here that Don can make it. You and the two children are the motivation for him to fight this. Others have done it and he can too
Charm

Thanks guys! I'm feeling better now! I'm ready to kick this sob in the face! Now if I can only convince Don there's hope! I called the cancer center of America in Philadelphia. They said they would pay for us to fly up, our hotel and food this is for our second opinion. They said we could have an appointment within a week! It all just depends on if our insurance will pay for it! I find out tomorrow. Pray they do!!! Don's mom, dad, and brother have been a huge help!! Don said he feels like there is a ton of mucus in his throat. I told him maybe it's from the trach just feeling different again. He can't remember what it felt like before. Has anyone else had this problem? Also he says he is craving a tall glass of coke. He can't even stand having the speaking valve in

Great news on the second opinion. Will pray the insurance company says yes.
Can't help on the trach issue.
Will watch for news tomorrow.
Thinking of and praying for you guys!!
Kathy

The trach needs to be removed and cleaned out. Do you have a visiting nurse that comes to your home or does he go to get checked at least weekly? When I had my trach the nurses in the hospital were supposed to be cleaning it daily but it wasnt done. When my ENT came to check on me he had a fit and cleaned it himself. By getting it cleaned out Don should also be suctioned out. Boy would I hate having that done but I always felt so much better once it was finished.

Here is a list of NCI cancer centers. There are some top notch facilities in Philadelphia (Fox Chase and Kimmel Center are NCI). Please take some time to check out the list. Im not familiar with the facility you mentioned or if they are a NCI CCC but I have seen their ads on TV. There are some different groups out there which will pay for air fare and places to stay that will be either very reduced of free. Off the top of my head I cant remember but maybe someone else here would. For soem reason an organization called "wings" seems to stick out in my mind for free airfare.

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list2.html

Thank you Kathy and Christine! I take the inner canal out twice daily and clean it. Do you mean you were told to take the whole trach out? I also suction him out every couple of hours or he coughs it up himself.

Hi Callie, so pleased you are getting your head around this.
Do not take the whole trache tube out, this would present a huge danger of then losing Dons airway by not being able to reinsert the tube. You are doing the right thing by cleaning the inner. That's all that needs doing. Are you able to suction Dons mouth and throat for him? This should help if he complains of too much mucous. I think the presence of the tube will also cause pressure and be uncomfortable for him,maybe that's what he is feeling coupled with the presence of the tumour.
I am praying that your insurance co. Will cover things for you. Please get this 2nd opinion as quickly as you can. I certainly hope Don will go with the surgery. It gives him a chance of life and a chance is better than none. As I have said, Kris is doing well - though I am scared to say that incase I jinx him.
Thinking of you all and praying,
Tammy

I've heard of cc of America... They are private cancer hospitals I believe. Though a second opinion never hurt. As for the mucous I remember mine being very mucousy I only had it in a few days - it may have to do with the whole healing process etc.. His body's way of dealing with the trauma - I believe once he adapts to it it and heals a bit it will clear up a bit, and tamvonk was right don't remove the trache ever - just the cannula, and do the suctioning (which I have to say I hated immensely when I had it done to me) mind you the nurses were rather violent with the suction and I'm sure one of them scraped a layer of skin off the inside of my bronchae one day with the damn thing! But aside from that I think it's just a waiting game, one of my schools has a severely disfigured little girl there - she was either born with a missing jaw or had to have it removed. She has a permanent trache and has to be suctioned fairly frequently - it may just be normal. Hugs - good luck with the second opinion.

Callie --

See this thread about Cancer Treatment Centers of America from three years ago. One thing I noticed in looking at the CTCA website this morning is that it has only one otolaryngology (ear-nose-throat, or ENT) specialist on staff in all of its hospitals. I'd consider that a red flag.

While UAB, where your husband has been treated, is very highly regarded (it's part of the National Comprehensive Cancer Network, the alliance of 21 top cancer centers that devises the state-of-the-art treatment protocols published each year), I understand your desire for a second opinion -- just get it from somewhere equally as reputable, with a dedicated head and neck cancer clinic that see hundreds of cases or more each year. (Note that UAB CCC has five ENT specialists on staff.) The top institutions in the U.S., as others have mentioned, include M.D. Anderson in Houston, Memorial Sloan-Kettering in New York City (both of which are specialist cancer hospitals) and Johns Hopkins in Baltimore. Closer to home for you, a number of OCFers have been treated at Emory in Atlanta.

I wish you all the best.

Here is the link to Johns Hopkins

http://www.hopkinsmedicine.org/kimmel_cancer_center/types_cancer/head_neck_oral%20cancers.html

Click on "out of state patients"

Praying for you guys!

Thank you guys! I was mainly going there so his family could be of more help. But he keeps complaining of being short of breath and we're both afraid it's the tumor. We talked this morning and we're sticking with UAB and doing the surgery. The earliest they can do it is August7!

Just FYI -- several OCFers have been treated at the University of Pennsylvania Abramson Cancer Center or Fox Chase Cancer Center, both in/near Phila. and both very highly regarded.

Callie - August 7th sounds like a long ways off. Maybe you could ask if they can move it a little closer? Or let you know if there is a cancellation in their surgery schedule? I had surgery (non emergency) recently and they called me when they had a cancellation so I could have it sooner. It doesn't hurt to ask for what you want/need. Praying for everything to go the very best way possible!

Hi Callie:
I'm from Huntsville, AL and had Dr. Carroll, UAB for my doctor although I had already had surgery (tonsilectomy) in Huntsville when my tonsil cancer was found - went to UAB for consult on follow-up treatment - more surgery (to remove residual cancer they couldn't get with tonsilectomy) and radiation, or 7-weeks stronger radiation with 1/day week chemo in Huntsville. I chose no surgery at UAB, but had follow-up visits with Dr. Carroll. I hurt for you guys, especially having to wait for a month - also, I really encourage a second opinion. If at all possible, I would go to MD Anderson or Johns Hopkins. If that's not possible, the University of Pennsylvania. I will be praying for you and so glad you found the Forum because everyone has given you so much information and everyone really cares for you and hubby.
Hugs from julieann

Thank you, I already talked to them and he is up for the first slot if there is a cancellation.

Tomorrow is Don's checkup. We'll hopefully get some questions answered and learn more about this surgery. I pray when they do the surgery they can save at least one of his vocal cords. Don told me that after this surgery, he hopes his neck doesn't feel like it's in a vice, like it has the last 7 months. I told him I hope not either, but that if he didn't start doing his neck and mouth exercises he probably wasn't going to feel much better. He never opens his mouth!! He'si starting to complain of both jaws hurting. I wonder if this is a sign of trismus? I'm worried about our kids as well. I know this affects them as well. Don use to play with them all the time now he can barely get off the couch, or pick the little one up. I am asking about his thyroid tomorrow as well. Thanks for listening

Best of luck to the both of you. I hope you got some hopeful news. I'll be thinking of you. Please keep us posted as you are able.

(((hugs)))

Good luck tomorrow with Don's checkup. Is it a UAB? Keep us posted and prayers headed your way.
julieann

Hey Callie,how's it going? Any decisions yet?
Thinking of you all, Tammy

Me too. Update us when you can!!
Kathy

Hi Callie, I've been thinking of you and Don a lot today, and hoping things are going well. Linda XX

Update...

The checkup Wednesday went OK I guess. They told us he has a 20-25 % chance of cutting all the cancer out. The doctor also said he may have wound healing problems since they're cutting into radiated skin. Which is just one more thing to worry about! Also they said he probably will never even be able to have a voice because right now they are just focusing on taking care of the cancer. He had bloodwork done the same day and everything came back looking good even the thyroid. So i'm still at a lost for why he is having hot flashes. Any suggestions? The nurse called yesterday and they had a cancellation so Don's surgery is moved up to July 26th. That's one prayer answered!!! He hasn't been able to sleep much at all still. I asked for a sleeping pill and the doctor said probably not a good idea. I tried melatonin and it hasn't done anything for him. Thank you all for thinking of us. It means a lot!!

Take care,
Callie

Julieann, yes it is at UAB.

Good luck! Again the always give you worst case scenarios. Have faith. Hugs.

Callie

Doctors have to mention bad possibilities like wound healing issues but I had the "maximum" radiation plus terrible radiation dermatitis on the exact same skin that my surgeons operated on and the wounds all closed just fine. In fact, in two years I could barely see the scars. Don will probably be fine on that.
Charm

Thank you both! I keep telling myself doctors have to tell you all possible scenarios, but I just hate thinking if he has to go through something else.

So glad you updated Callie. You have many people praying/ thinking of you. Hang in there and keep us posted!!
Kathy

Hi Callie. You are just like the rest of us. Normal. I too can't but help worry that Kris may have to face more surgery / treatment. Many times each day I have to tell myself not to borrow sorrow from tomorrow. This is easier said than done. One day at a time Callie.
Kris's surgeons also said that the prior radiation would make both the surgery and healing difficult. But the surgeons did a great job and Kris healed without any problems. Like Charm, you have to look very hard to even see the scar now. Apart from the hole in his neck that he breathes through of course. LOL
Thinking of you and your family. One day at a time Callie.
Tammy

Callie,

I'm so glad that his surgery got moved up to the 24th.

I can't imagine why they wouldn't give Don something to help him sleep. Sometimes all it takes is a low dose of an anti-anxiety med, like clonazepam, to help him sleep. When I was first diagnosed, I was a total mess. I couldn't stop my entire body from trembling. I was pregnant and the only person who would give me anything to help was the high-risk OB-GYN that took over my OB care when I was going through treatment. She said that I was "on a spitting dose", meaning that it was so small, not to worry. Only as I got closer to delivery, did I have to wean off of it and by that time, I was well on my way to recovery. This may be something you want to ask for again because Don is doing to need all the rest he can get and it's not fair to make someone suffer more than they already are.

Good luck to the both of you and thank you for the update.

xoxo,
Kerri

Thank you all for the wonderful words and prayers. I know everything happens for a reason and if we hadn't been sent for the biopsy his airway would most def. be completely shut by now. I've tried to get him to go for a walk outside during the day or anything to give him a little exercise, but i've been unsuccessful. He still has excessive mucus coming out of the trach tube. He already takes robitussin for mucus and nexium for acid. He usually is up spitting that out or letting me suction him every 30 minutes to an hour. He never sleeps for more than an hour straight. He dozes 24/7! We both dread, but can't wait for his surgery on the 26th so we can start the next chapter of his recovery.

Thank you all,
Callie

Ok guys I need some more advice please!!! Last Friday on July 20 @ 3 am I found Don on the floor unconscious, stiff and his eyes wide open. I called 911 and suctioned him out. He was responsive before the ambulance arrived. During that episode he had also lost control of his bladder. We went to hospital they ran tests, nothing showed, so we went home Saturday afternoon. He had to have a blood transfusion at the hospital as well. Anyways we get home and he has a lot of facial swelling. The doctor said to give him benedryl and if it worsened to bring him back. It went down some. Monday morning around 8:00 he said he was feeling light headed he then passed out repeatedly every few minutes each one only lasting a few seconds. I called 911 again took him to hospital where they said his heart was plummeting causing his blood pressure to plummet in return causing him to pass out. Again this time he lost control of I his bladder as well. They transferred him to UAB heart doctor. It hasn't happened since we have been down here. He is still severely swollen around his face and throat area. The doctors have said it doesn't look as though it's his heart. They are saying it has something to do with his vagus nerve running from his heart up his throat. Two possibilities: tumor has spread to vagus nerve causing it damage which causes all other problems or it could be his neck swelling causing it to put pressure on the nerve and causing the same problems. We'll find out more after CT . Has anyone ever experienced any problems such as these? Thank you all in advance! The doctor said if it is the cancer they won't be able to do his scheduled surgery on Thursday. Any prayers are greatly appreciated!

Callie

Callie,

If it is nerve involvement it considerably complicates things so I'll be interested in seeing what the CT shows. The swelling makes sense to me so I'm surprised they didn't prescribe a steroid to bring down the swelling. If they haven't...why not? Depending on the answer makes me question the quality of medical care he's receiving.

If it is nerve involvement and you're not currently being seen at a CCC then get to one or get a second opinion.

Keep your chin up

Eric

Hi Callie,
I have no answers for you.
Kris had a similar thing happen with his chemo. He too would pass out and I would have to shake him to rouse him and get him to take a breath. It was very frightening. We never did get an explanation from the chemo docs.
I am praying that Dons CT shows no nerve involvement. One day at a time Callie.
Hugs and hand holding to you, Tammy

There is definately more going on than what is being seen. I am surprised they sent him home. It could very well be the pressure on the nerve. Hopefully you have some answers or relief soon... Hugs!

Oh I'm sorry, no they didn't send us home. Eric, I asked the doctor about steroids and he said he wouldfeel uncomfortable giving him steroids so close to his surgery. Some good news, his eeg showed no signs of seizures and his brain CT showed no tumor or mass. These tests were from the other hospital before he was transferred. He is getting his trach changed to one with a cuff and he will have a CT of just his throat in the morning if he can tolerate to lay flat. Thank you for your replies. This stuff is all so scary!!

Callie

Wow Callie! I'm so sorry to be reading all of this. I pray things start looking better and your hubby can get surgery and begin to recover. Try to get some rest and take care of yourself as well.

Dear, Callie.

I am so sorry for what you and Don have been going through. It must have been terrifying to see him like that. I have to commend you for being calm and level-headed during these emergent situations. For such a young woman, you are far more mature than your years. Don is lucky to have you by his side.

I sincerely hope that there is no tumour invasion into the vagus nerve. Hopefully, it's just the swelling causing these episodes and nothing that can't be taken care of conservatively and certainly nothing that would prevent him having surgery later in the week. I am also surprised they didn't give him steroids in order to bring down the edema. I'm sure they have a good reason, as we are not doctors.

It may be worthwhile asking (sooner rather than later) if there is a physical therapist on staff that is qualified to treat lymphoedema. Perhaps that might help the swelling enough to make a difference in the way he feels. I'm not sure if there are contraindications for this, but it would be easy for the doctor to call the rehabilitation services department in the hospital to ask for someone who specializes in lymphoedema.

I hope you are hanging in there. Is Don's family still down with you to help out? I hope so. Please keep us posted as you are able.

With great care,
Kerri

I am sure they have but did they discuss the possibility of a partially blocked carotid artery or a blocked Subclavian artery which both can lead to a loss of blood to the brain. Both also can lead to a reverse flow of blood to the lower extremities resulting in a pooling of blood in the neck area.

Everyone please say a prayer that Don's surgery goes well and he doesn't have any problems with his heart or blood pressure dropping during surgery! Thank you all so much in advance!
Callie!

Absolutely, Callie. Linda xxx

Thinking of and praying for you and Don as he goes into surgery. Hang in there!

Thinking of you, Don, and the kids! Hugs to you!

Don's surgery wasn't an option his swelling was all due to the cancer. They said his best benefit would be palliative care at this point. That he has probably 6 months but judging by how things went this week probably not that long. I just can't believe it turned so bad so quick. Thank you all for your thoughts and prayers.
Callie

Oh Callie, I am so sorry about the bad news. I will keep you in my thoughts and prayers. I hope that Don's doctors are hooking you up with hospice. Some help from them would be beneficial for both of you. Sometimes it's hard to ask for help and to take care of yourself when you are so accustomed to focusing on Don.

Bless you !

Dodie

Oh Callie, I'm so so sorry to hear this sad news. Sometimes this disease just moves too damn quick

Callie, I am so sorry for the latest prognosis. Oral cancer is such a terrible disease! It can be a very fast moving deadly disease. Hope you are able to spend some good quality time together. Hospice would be a very good idea.

I am so sorry to hear this. I hope you can spend some quality time together as a family and make some memories for your kids. I know how hard it is to deal with all of this with little children. They are here for a reason though, they are such a good distraction and they will carry on their daddy's legacy.

Callie - I'm so sorry to hear of this latest sad turn of events. Sending prayers your way and hope that in the days ahead there will be some peaceful moments for you and Don and all your family.

Oh Callie, I am so sad to hear this news. Are they offering Don any chemo to slow the tumour growth down and give you all more time? Hospice and the many services they offer is a good idea for you all.Treasure every moment. Love each other heaps. Wish we could help you more.
Tammy

Dear Callie,

I am so very sorry to hear this devastating news, especially for such a young family. No one should have to endure these things. It makes no sense to me at all.

I hope that you all are able to share lots of special moments that will last a lifetime. I agree with everyone else that hospice can make all the difference in the world when a family is going through the end of life process.

I wish I could take it all away. Hold each other close and feel the love.

Please come back for support whenever you feel up to it. We are always here for you. Please do something to take care of yourself and spend some time doing something fun with your kids.

With great care,
Kerri

Hi Callie,
So sad to hear your news. Is Don in pain or is it being contolled? Like everyone has said, I pray that you will have wonderful memories to help you through this. If he feels up to it, maybe he could do a video type thing for the kids to have forever? Please know you are in our thoughts and prayers.
Kathy

Callie,

I was in Dons exact position just a few months ago. I had received a second round of radiation at U of M for a tumor that was wrapped around my carotid artery and the treatment didn�t get the whole tumor. U of M said I could receive no more radiation and surgery was not an option due to the artery. In short they offered me palliative chemo to end my days.
I went to MD Anderson for a second opinion and they agreed with U of M. I went to Memorial Sloan Kettering for a third opinion and got the same answer. I then went to the University of Pittsburgh for a forth opinion and they said they had a trial going for late stage, pre-radiated, non-operative head and neck tumors using Erbitux and cyber knife radiation. They have devised a radiation protocol that allows for additional radiation even when all others say that is not advisable.
I went through the treatment at U Pitt in May. This consists of four treatment of Erbitux and 5 radiation treatments over two weeks. My tumor was in my neck and measured 3 cm by 1.7 cm so it was big.
I had my two month post treatment PET/CT scan two days ago. The scan was clear. If there is any chance you can get your film to U of Pitt have your doctor put together the latest PET or CT scan on a CD and get it to:
Dr. Robert Ferris
Email; [email protected]
Address: Eye. Nose and throat specialist
203 Lothrop St.
Pittsburgh, PA 15213
Ph: (412) 647-2100
Send him an email ASAP and tell him Tim Simon sent you. Get that film to him ASAP and he should let you know if they will take the case in 48 hours or less.
Keep in mind that I had three of the top head and neck cancer specialist in the US tell me I was dead. I have a clear PET scan from Pitt that proves them wrong.
P.S I passed out on my kitchen floor some months ago. The paramedic could not even get a heartbeat. At the hospital they said it was 30 beats a min. They were not sure what it was. I scheduled a PET scan and found out I had a recurrence. The tumor was pressing against the vagal nerve making my heart beat slow down. That�s how I found out my cancer was back.

Hope this helps.

Great news, Kelly! Best of luck with winning the war and congrats on being a great self-advocate!

Kelly,

That is fantastic news!! I wonder if they have an approach that would work for Base tounge and if I could send them a dvd of all my info. I contacted MD Anderson about just sending them a dvd but they required that I come there. I have a post at " Oral Cancer Recurrence > 1st recurrence and robotics" that tells more about my situation.

I am be prepaired for surgery (could be as early as next week)that would probably involve removing my entire tounge.

Callie and nocam,

When I said U of Pitt would let you know if you qualify as a candidate for their study it was in reference to your current condition based on the files you send. If you are a candidate they will then need to see you for a final determination. I went through that and informed them on a Friday that I chose them to do my treatment; my first session was on Wednesday the following week.

Obviously I am a big proponent of second or third or fourth opinions. Then again my life was on the line. U of M told me I was out of options at 10:30 in the morning; I was scheduling my meeting with MDA by 1:30 the same day. It took me the rest of the week to schedule meetings with Pitt and Sloan and get my records overnighted to all three of them. I spent the next two weeks flying to Houston, Pittsburgh, New York and back to U of M for a consult with a doctor I trusted there. I had the money to do that at the time but I would have sold my car in a heartbeat if that�s what it took.

Don�t let one institution control the rest of your life (or tell you- you don�t have one). Get out there and get as many opinions as you can from top notch institutions.

Hello Kelly and thanks for responding. Yesterday I spent most of the day reading through your +- 450 post. I am inspired by your knowledge, courage, determination, perserverance etc. as well as your ability to maintain a very positive attitude through it all. I hope that on this very day you are back to a new normal which is at least equivalent to the way you were before the reoccurance and progressively moving forward successfully. I am contacting my Doctors to see if my info can be sent to Univ. of Pittsburg for a determination as to whether they can do anything for me. You have surely introduced others to a possibility for treatment which they were unaware of until reading about your experience. I, as everyone would be, am devastated by the thought of losing my tongue, voice box and soon perhaps my life to this dreadful diease that came with so little warning.

How are you doing? Are you eating, working and generally enjoying life in a confortable way? I hope so.

I grew up in Belleville Michigan which is a small lake front town near Ypsilanti Michigan.

Take care!

I'm sorry and god bless! Callie but do push for the trial if you can get your husband's files looked at - hugs!