CSN Login
Members Online: 6

treatment plan finalized

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

First I want to thank everyone who has been so encouraging to David and I through the surgeries up to this point. I also wanted to update everyone on the pregnancy. Unfortunately I had a miscarriage Friday morning. It has been a long hard weekend for me to say the least. Today we went to see the radiation oncologist and as expected will have 35 radiation treatments heavy on the right side and lower on the left side of the next. The TORS surgery was successful so they will not radiate the base of the tongue area which is great. We see the chemo oncologist next week and get fitted for the mask next Wednesday. The doctor told us the plan was to start the chemo/radiation the last week of October, which will mean David will finish treatments in the middle of December. The doctor did not sugar coat anything with David and for the first time since all of this started I could see David visibly shaken. The doctor told him it is doable, but head and neck patients tend to have it the roughest and its like playing a whole football game without being able to pass the ball. He told us we needed to stay positive, get in the nutrition, stay hydrated and stay on top of the pain. David seems to have difficulty with all of those except the positive part. He is still struggling to even get in four cans a day and now the fluid intake is slacking as well. He is sleeping many hours a day and has lost 35 pounds since June. I worry about my husband and all I can say is I am not liking our life very much right now. Sorry for the negative post, but it's been a long hard road so far and we haven't even begun the treatments.

luvofmylif
Posts: 344
Joined: Sep 2012

So sorry about your miscarriage...you have had it so rough and so has your husband but I know eventually better days will be ahead.

We have almost the exact same story. My husband starts his radiation on Wed and chemo on Thursday. Also, because his margins at BOT were clean from surgical laser removal he will not have that area radiated and they will only radiate the right side of the neck because nodes were positive on right but no radiation on left because all of those nodes were neg.
I, too, have anxiety. I wish your husband could have caught up on some of his weight loss before surgery...John also was on tube feedings but has had time to get back to 95% of normal with swallowing and has regained 15 of the 20lbs he lost.

I will be praying for the both of you and it is good that we have all this support on the site to help us through this.

Good luck

Joan

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I was wondering how long it was from the time of John's surgery until he was cleared to eat and drink again. David had a swallow test last Wednesday and he was still aspirating some into his lungs. He was scheduled for another swallow test on the 17th, but he asked if he could have another one this Wednesday because he hates not being able to eat or drink anything. Thank you for you well wishes. I am praying the same for you and your husband.

luvofmylif
Posts: 344
Joined: Sep 2012

He had surgery on Aug 17 and surgery was about 14 hrs long, so very extensive. He was intubated for 3 days in the ICU and was in the hospital for 6 days and on tube feedings the entire time. We came home on a Saturday and the following Thursday we saw the dr and he took out the feeding tube after John passed a swallow test. The first few days were rough, though, and he was definitely aspirating for several days. In fact he spiked a high temp the following weekend and we went to the ER and he had a CXR which showed aspirate in his lungs. They put him on antibiotics and slowly on the next few weeks things improved and I would say his swallowing is about 90 to 95% normal. The speech pathologist also did give him some hints for swallowing and even now he has to take small bites and take it slow. Things should improve for your husband but it does take time but slowly they get better. His recovery reminds me alot of Johns.

Hope this helps... and tell him to hang in there. I know its slow but it will improve.

Best to you

Joan

ditto1
Posts: 646
Joined: Mar 2012

Diane and I wanted you to know we are so sorry for your loss, and you are in our prayers. Glad to know your husbands plan is about to go into full action, it is a tough road but doable, redundant but the fact is some do better than others and we will pray your husband falls into that category. I did have some rough times, but over all I was very blessed and came thru it fairly well. Now NED according to the CT scan and RAD and ONC, now just need to pass the ENT Docs review and hope she agrees. So tell your husband what so many told me 6 months ago, Get ready to fight and look forward to a long life after NED.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

swallowing is obviously huge, but hope he realizes that it's only half of the eating ballgame.
I've always been able to swallow.
but after getting one's throat nuked by rads...with mouth soreness, dry mouth, burning, and lack of taste...the tube is still a godsend.

I'm three months out from rads, and still using my tube.
there was a time when even water burned--even though I could swallow, I got all my hydration via tube. water is better now, but I tried eating some mac salad last night, and it was blecch. how did I once like eating that?
eating by mouth is still a slow, joyless chore.

so thank the stars for my tube. I've gained back 20 lbs. entirely via tube. half-way there. and when food doesn't irritate my mouth and has taste, I'll eat again.

sorry for your loss, and best wishes to your husband.

PatDarago
Posts: 13
Joined: Sep 2012

Just wanted to say I know what it's like to be on the tube. BOT in 2010 ,feed tube for four months and started drinking Ensure( very painful at first) but did not like the tube!( made me feel inhuman ) .I am 28 months out right now and eat just about everything I want but have ORN that effects my eating habits. But I eat and enjoy everything and every time it eat because I know I am lucky to be doing that and know that some day I will not be able to eat. So stay positive and enjoy what you can. Hope everything works out for you!

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

inhuman, lol. but there is something to that...when I watch food network I feel like a space alien gathering info on primitive human feeding habits. ;-)

actually ate one boiled redskin potato tonight, mashed up and covered with alfredo sauce. still not a lot of taste, but not gag-inducing either. making progress!

CivilMatt's picture
CivilMatt
Posts: 3263
Joined: May 2012

Vivian,

I am sorry to learn about your miscarriage (can we throw some more challenges your way).

Let David know that things will (really) be alright. When side effects happen, there is generally a hint at what is happening. Your doctor hit the nail right on the head with nutrition, hydration and pain relief. Staying positive will pay dividends. It takes WAY to much effort to be negative, you don’t have time for it and it will drag you down. Currently, as hard as it is to swallow, keep swallowing, there are pain meds to help if the throat, mouth or tongue is sore. This site had me so afraid of forgetting to swallow I started drinking 6 to 10 glasses of water a day and still do (at 6 months post). While I did have a PEG I still manage to drink one meal a day throughout treatments.

If David has anxiety about the mask or rad treatments, now is the time to get ready. I had to get a prescription for Lorazapam (Matt’s little helper) to get me through.

Good luck and have a safe and uneventful journey.

Best,

Matt

hwt's picture
hwt
Posts: 2142
Joined: Jun 2012

So sad to hear of the miscarriage. I know that had to be devastating for you both. Know and trust that God has a plan for your family.
Like Matt, Lorazepam became my BFF...it still is. As for the mask, the tech that made it told me to imagine I was getting a facial, I did and it was a piece of cake. They lay a warm wet open mesh over your face and in a matter of minutes it takes shape. Maybe it was so easy for me because I had in my mind it was going to be plaster of paris. I have heard that some people don't have the eye holes cut out. Unless there is a medical reason, I would ask to have them cut out. I didn't have to ask, mine were already cut out. Radiation tx does not hurt at all, it's all about the side effects. Hoping David is one of the lucky ones with an easy journey there. Short of lingering lip sores, the side effects I had only seemed to last about a week then went away and I moved on to a different one. I slept allot! As for the swallow test, I never did pass it. I write that as I'm sitting here eating a piece of coffee cake :-) The surgeon said his speech therapist could do a better read than having another swallow test. I saw her, she had me try applesauce and a few other things there in the office and told me I was good to go and I was. Like everyone else, I stand by hydration, nutrition and add at least a very short walk a day if he can.

katenorwood
Posts: 1887
Joined: May 2012

I am so sorry that life is being so unfair at this point. Please focus on the positives and tell yourselves you can get through it all. All my prayers and thoughts of peace and healing are sent your way ! Katie

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

Asking for strength for you both.

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I would like to thank everyone for the support you have been to me. I have been a basket case lately. Maybe it was all the pregnancy hormones wreaking havick. I don't know, but today the sun is shining and I am feeling better. I cleaned the house and now relaxing and getting the encouragement I need from people on this site. I have to say I knew our support system would be small, didn't realize how small. People really get freaked out by cancer and the feeding tube. So far since David has been home we have seen his mother, the pastor came by once and a client of David's. We don't even really get phone calls or text messages. David is happy with his support system, but I find it kind of depressing. Oh well I am going to be more positive today. I am actually going to a dance lesson tonight. David really is encouraging me to dance. I have missed it so much. I guess I haven't really mentioned it, but I am a competitive ballroom dancer. I was in such a bad place last night I was telling David I thought I was going to give it up. We did some major praying last night and this morning I really don't want to give it up anymore. Bless you all.

LeoS2323
Posts: 147
Joined: Mar 2012

Firstly so sorry to hear about your miscarriage. It must be incredibly hard to deal with the emotion of that along with everything else you are dealing with.

I think judging from your posts you are doing really well and trying so hard to be strong for David, I think you are doing a great job of holding it together under the circumstances so don't be down on yourself, you should absolutely be proud of yourself.

My background is I have been fortunate enough to avoid radiation and chemo thus far, my treatment for salivary gland cancer was a neck dissection and some more surgery, and at the moment I'm clear so I can't give any advice on the treatment front.

However I read the bit about your ballroom dancing - I would urge you really strongly to keep it up. After the neck dissection, tonsilectomy and BOT biopsy I had a nasty wound infection as well, it was tough going but I found that exercise and in my case getting back to playing sport really gave me a lift and helped me deal with things.

As soon as I was able I got to the gym, and started football training (soccer as you call it in the states I am in England) about a month and a half after the dissection, at which point my neck only felt like it was likely to come apart rather than certain...:-)

I found it helped me even more mentally than physically. Working out in the gym and being stimulated by playing the sport that I loved brought me back to my 'old life', to some normality. It gave me a base to build from and I haven't looked back. I scored my first goal of the season on Sunday, and had a NED today.

If your passion is for ballroom dancing (and it sounds like you are really good at it!) its so important you keep that up. For your confidence, your physical well being and to keep the routine of something which is simply pleasurable in there amongst the incredibly tough things you are going through. Its vital to be able to not think about it, to throw yourself into something you love - if only for a short while. It will give you strength.

Good luck Vivian, I'm sure there are better days ahead for you and David so hang on in there. And as they say on 'Dancing with the Stars' - keep dancing!

All the best

Leo

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

I am so sorry about the baby. It is a very long and tough road but rest assured that the road will end and your life will be good again. Head and Neck patients do have it so much harder because the biggest challenge is eating and keeping weight on while you battle the beast. I will keep y'all in my prayers. Sometimes for no good reason at all Life is just hard, but you will have good times again. Hang in there. :)

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

sorry to hear of you loss, prayers going out for both of you and your loss

i know David has not started treatments yet but it sure sounds like IV fluids every other day are in order along with continued push of fluids and flood by mouth. to me way too many lbs. lost already.

rest assured it will get better until the treatments start.

more prayers for wisdom and understanding being sent

john

ToBeGolden's picture
ToBeGolden
Posts: 696
Joined: Aug 2010

Sorry about your loss. I'm sure I will be expressing everyone's sentiment when I say: You should feel free to post about yourself whenever such a post would be helpful. This site is not just for patients, but for caregivers also.

The making of the mask is worse than the use of the mask during radiation. Reason: it takes much longer to make the mask. However, it is like a facial, a warm towel over the face. The staff will keep talking to David, to elevate the fear of being alone.

No part of my cancer was in the mouth, so I had it easier than many on this board. You and David's healthcare professionals will get him thru it: drag him thru it, if necessary. Rick.

boardwalkgirl
Posts: 263
Joined: Jun 2012

So sorry for your loss. Treatment will be tough but you will get thru it. I never used over 4 cans of Jevity a day in my feeding tube thru treatment but I was able to eat something thru out. I lost a little under 20 lbs in the 8 weeks of treatment and now am at 27 lbs lost but I had the weight to lose. IV Hydration can make such a difference in how you feel too. Don't hesitate to go in and get it if needed. Will be praying for you as you begin this journey.

Tim6003's picture
Tim6003
Posts: 1501
Joined: Nov 2011

So sorry for the loss of your baby. My wife and I had two such losses between the five children we noww have.

As for David/ the 30lbs is quite a bit, so I hope the team of docs and you will discuss keeping his feeding tube in during treatments. I lost 70lbs during tx. and my tube was placed before my tx even began. Protein is a must for him to heal. He will burn 3,000 - 5,000 cals a day during tx ...also, the last thing you need during tx is aspiration Pheumonia. I don't share any of this to be negative, I share bc all of our experiences give knowledge and knowledge is power ...know your enemy is prudent.

With all that said, David is young, he has you for a caretaker and though tough, you two will have a wonderful life together when all this is over ...and lot's of chidren, at least I highly endorse many kids, makes life more fun :) :) :)

Chin up!!! Prayers continue for yuu and David.

Best,

Tim

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2015 © Cancer Survivors Network