Hi,

I'm so glad I found this site during our diagnosis stage! My 43 year old husband Sam got sick last Christmas and had a sore throat, cough & headaches which led to a mild pneumonia diagnosis. The headaches and trouble swallowing continued and lymph nodes on the right side of neck started swelling in mid-February. After blood tests, sinus & throat ultrasounds, and a chest x-ray, the family doctor thought it might be lymphoma and referred us to a general surgeon who performed a lymph node biopsy (full node removed) mid-March where he told us it was squamous cell carcinoma. A gastrophy, CT scan, tongue biopsy & PETscan later indicated the tumour was quite large, but was confined to the right side of the tongue/throat and had not spread elsewhere. We started at the BC Cancer Agency two weeks ago and had the 2nd of 35 radiation treatments along with the 1st of a once-weekly chemo booster of Cisplatin today.

Will be a tough road as we have a 2 yr old toddler and 5 month old baby, but have hope as my mom is a throat cancer survivor of 15 years. Am still on maternity leave so driving him to treatments, etc. is possible.

Not sure if others have experienced, but for the tongue biopsy the surgeon took 4 different samples and the swelling was so bad for two days Sam couldn't really take anything (not even through a syringe) - we almost ended up getting an IV drip. It's been almost a month post-procedure and he is still having lots of trouble with his tongue (swollen, lots of saliva, can't move around enough to eat solid food). As he's already lost over 50 lbs before start of treatment, it's hindered our efforts to get the weight stabilized and feeling as strong as possible going into the treatments. Any ideas as to what to do? PEG was inserted 1 1/2 weeks ago and diet is almost all high calorie shakes/Ensure.



Elaine

Welcome
In the forum home page click on "General Board". click on "How to Get The Most Out Of This Forum". In the second response from Davidcpa, there is a link to Carnation Instant Breakfast VCH. It contains 560 calories per 8 oz. serving. There are also helpful hints to navigate this forum.

Other people will answer your other questions shortly, I'm sure. Good Luck!

Hi Elaine,

Welcome to the board. We are glad you are here.

Sounds like I went through something similar to your husband but I had surgery first then radiation.

If the swelling is not going down from the biopsies, you need to work with your doctor(s) to get that under control before they start radiation.

The single most important item in fighting cancer and it's treatment is keeping your nutrition up. I was ingesting (I ended up only being able to use the PEG since I could not swallow) 7 cans of ensure a day with an equal amount of water after every can. I spaced those feedings out to about every 3 hours of the day. It provided enough energy to get through the treatments, but I still lost 45lbs over the whole span of 2 months of radiation. Ask your doctor if this will work for your husband.

I am sorry to inform you that if nutrition is a problem this early, it has the potential of getting worse before it gets better. Not trying to be negative, but rather realistic and driving my point home that nutrition is very important to completing the treatments successfully.

Good luck and fight hard.

As always if you have any questions, ask us.

Jim

Elaine,
Is a dietician/nutritionist part of your treatment team? If not, I would suggest looking into this. My husband's nutritionist was really good at keeping close tabs on his weight, nutrition, metabolism, etc. It can get to be pretty complicated as treatment progresses and it's great to have expert advise.

Best to you and your husband,
Anita

Hi Elaine

Sorry to see your husband is having feeding problems so earlie. Marvin went though good days and bad with his feeding. I use to get really upset if everything I put in came back up but I have learned to have patients and trust in God that the next time will be better. Marvin also had to have 7 cans a day plus water. This was hard during the drives for treatment. We drove 1hr each way everyday and would have to try to get food in early enough before we left so we didnt upset his stomach then I found out I could give him a can in the car before we started home so that helped. On chemo days they would give him extra fluid for me which helped on the water on those days and I got some of the Carnation vch so we had less cans on busy days. With your mother being a survior that will be encouraging to you and your husband. I know it will be hard with small children. I am thankful that ours are older but it was hard for them (they are in college and away from home)expect for 1.

Take one day at a time.

Elaine,

Here's the info on VHC if your interested:

Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only pay about $32.00 per 24 can case at Walgreens. That's only $5.00 a day for 2000 calories. Click on this link:

http://www.nestle-nutrition.com/family.aspx?objectID=86E49EB3-BE25-4B16-81D7-235E6F6E5183

Under the PURCHASE PRODUCTS tab, select FIND A PHARMACY NEAR YOU.

Under the PRODUCT NAME pull down, select Carnation Instant Breakfast Lactose Free VHC and fill in your zip code and they will give you a list of pharmacies that carries it.

At the top of that list note the Product Code and NDC Number in case that helps you when you call the store. When I call Walgreens it only takes a day or 2 at the most to get it delivered to the store and they call me when it's in.

You can also order it online but it usually costs more and takes much longer to get.

No, I do not work for the company nor do I get a commission (I wish) but this product made my feeding life during and post treatment much much easier and I am sure it will do the same for you

Hi, Elaine, First, let me say I'm sending you truckloads of strength to help you juggle your family situation- ye gads- 2 in diapers- and a husband with cancer - hope you have some family around! The statements above about trying to keep Sam fed and hydrated are right on and will undoubtedly be a challange for awhile. How is he doing his tube feeding? Does he spread them out over a long period so as not to upset his stomach?Do you have Pedialyte available in your grocery stores? [in the infant and kids section] Keep it handy in the pantry if his liquid intake for the day gets low. The trick now will be to find ways to get calories in him without his protesting too much. Encourage him to swallow when he can, but get that food down his tube! Hope you have a way to get some rest. Pulling for you-Amy in the Ozarks

Hi everyone,

Thanks for the responses and support. My laptop and I are lying on our sides outside toddler's room trying to outlast her for the night...it's been pretty much like this since we swapped her into a big bed so the baby could use the crib.

In the good old days (before diagnosis) I was waiting until Sam felt better before tackling this but we needed to get the baby out of his moses basket in our room to give us a little more rest. Can count on one hand the times I've gotten at least 6 consecutive hours of sleep since December! Not good to have both of us running on fumes only three radiation treatments in.

Sam has not started tube feeding yet, and is still able to get liquids down (although it is still very early in the radiation treatments). Carnation Instant Breakfast VHC is not available in Canada but I finally found a company that would let me ship my order to a family friend with a place in Blaine, WA. He hates the Ensure Vanilla flavor so I'm hoping the Carnation is better tasting.

The nutrionist came around to today's appointment and checked on Sam's weight - down slightly from his first appointment with the cancer agency two weeks ago. He responded well to the anti-nausea drugs as he felt little to no nausea after his first chemo session yesterday. Unfortunately, he was exhausted this morning and hasn't really shaken it...he was tiring very easily since getting sick in December as the headaches were severe and due to the rapid weight loss. How do you keep the energy up and stay positive?

Yawning, but not at you guys!
Elaine

Post natal and coping with cancer!.Wow what a load you have to carry on your young shoulders.The only advice i can give you is use this forum as much as possible and perhaps find someone you can contact and relate with on a more personal basis(private messages and e-mails).Support and somewhere to let off steam are vital, so dont refuse any help you are offered grab it with both hands ,and like my mum used to say ,when kids are asleep ,you sleep even it is at strange times.I wish you the very best of luck and hope you find the strength to cope with all that life is throwing your way at the moment.

Much love liz in the UK

DEar Elaine, well, you've posted twice and I am already really worying about you You obviously are not getting much sleep now [what time do you put your toddler to bed at night?] Do you have someone to help in the event Sam gets bogged down during his tx.? You could really get worn down over the next few months. Who is your support system? Amy in the OZ.

Elaine,
You've got a full plate, and they keep piling stuff on.

A suggestion for nutrition dirnk in Canada is Resource 2.0

Note it is "2.0" and not "plus" YOu can order it, of all places, through a Walmart pharmacy, or through Shoppers Drug Mart.

I tried every single product available, and it's the only one I could stand the taste of.Also, it is the highest calorie count (just shy of 500cals per carton) of any Canadian product.

Wishing you the best of luck
Wayne