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The Beast Strikes Again

wolfen's picture
wolfen
Posts: 1253
Joined: Apr 2009

Hello Everyone,

I am Wolfen. I have been a member of CSN since 2009. In 2008, my daughter, Johnnybegood, was diagnosed with Stage IV Colon Cancer, mets to liver and both lungs. Through numerous rads, chemos, surgeries and countless side effect alleviating meds, she fights bravely on.

I have spoken to a few very kind HN members through PM, but have been unable to post on the board because, at my husband's insistence, we had not told Johnnybegood what he is facing on the home front. She lives across the country from us and although it would be unlikey that she would read the HN board, I couldn't take the chance. We finally told her today, and as I expected, it was quite a blow. Cancer has struck my family again.

My husband is 65, diabetic, and has a heart condition requiring an implanted pacemaker defibrillator. About six weeks ago, he was diagnosed with cancer of the tongue(right side in the back)and lymph nodes(right side neck), as well as left lung. Don't know yet if the lung node is a met or a different cancer. Lung biopsy is pending.

We have seen an oncologist and radiologist. Suggested chemo is Erbitux. Suggested rad is IMRT(35 treatments), followed by surgery and reconstruction. Treatment is to be preceded with extraction of at least 12 teeth, all at the same time by an oral surgeon in a hospital surgicenter. As of today, we remain in a holding pattern because he is now experiencing A-fib and CHF. The oral surgeon will not touch him until the heart problem is corrected. I have made repeated attempts since Thanksgiving to get the cardiologist to understand just how serious this is. Right now, he is the puppetmaster failing to start the show. The attitude of the Physician's Asst.(who just graduated this year) is that it's okay for him to go ahead and get a couple of teeth pulled while his heart is in this condition. The oral surgeon's ofc. will be contacting the cardio tomorrow to explain exactly what his part entails. The usual correction method is to put him in the hospital, stop his heart, and then restart it.

This is truly a NIGHTMARE. I had to laugh when the oncologist said "Your ENT is like the quarterback of your team". That man dropped the ball after week one. I am the quarterback fielding all the arrangements, questions, tests, and "who knows what" to come. Some of this is familiar as I spent the first six months of my daughter's treatment with her, and although she was very, very ill, she didn't have the extra medical problems that my husband has, as well as this being a totally different type of cancer.

Is anyone here in the same boat(that is slowly sinking) or one like it as far as your medical conditions? I know, without asking, that his prognosis is not good. I really doubt that his heart and blood sugar levels can withstand the treatments. He has already lost his appetite and eats very little causing his blood sugar to be erratic.

Thank you for the Superthread questions. I'll also be checking the list of essentials for the appts. Which inexpensive protein drink can you recommend? We are on Social Security and definitely not wealthy.

The one "good" note about this is that we are near an MD Anderson and I have secured an appt. with them for this Friday. I would feel much more comfortable in a setting where there are many specialists for his various conditions, should an emergency arise. I also know the importance of getting that second opinion.

I aplogize for the length of this post, but I'm just at a loss and looking for any info. that any of you can offer.

Luv,

Wolfen

hwt's picture
hwt
Posts: 2236
Joined: Jun 2012

So sorry you are having to deal with cancer in your family once again. You are starting out on the right foot, prepared to be your husband's best advocate. I'm certain he will receive good tx at MD Anderson. Chocolate Ensure has always been my choice, I watch for sales and use coupons but it does get expensive. While less expensive, I did not care for Walgreen's brand. While getting it thru a feeding tube, my sister bought me Walmart's brand and that was fine. May God bless you and your family and watch over you during this difficult journey.

Candi

CivilMatt's picture
CivilMatt
Posts: 3345
Joined: May 2012

Wolfen,

So glad you have joined us. When we all put our heads together something good usually happens. It sounds like your team is getting organized; at least you have a (good) quarterback. It seems we all spin our tires a little getting started, here is hoping you gain traction fast.

Best,

Matt

KareGiver
Posts: 296
Joined: Apr 2011

I am so sorry to read of your husband and daughter's cancer. I am THRILLED to read you are the quarterback. Isn't that the truth? There must be an advocate for those with cancer. In our case, I feel like I have done "somewhat" of a decent job, but apparently not good enough. My husband and I have often wondered how others get through this maze. Wishing your husband, your daughter, and you the best. Positive thoughts and prayers all the way!

Lynda

NJShore's picture
NJShore
Posts: 412
Joined: Nov 2012

Wolfen,

I am sorry you find yourself back, but you've come to the right place. I've just settled in here myself, I too am a caretaker. It's a hard job, but you really are doing all the right things... You are guiding your husband into good hands, and you are his advocate.. I for one have one motto, what my husband wants or needs, he gets. Continue to be persistent, it works. And there are a lot of us to listen and cheer you on.

Our oncologists have samples and coupons, ask for them when he needs things, it helps. I am not sure if anyone has tried writing to the manufacturers or not, but might be worth trying, they might just send you some products or great coupons. Nothing ventured nothing gained.

My best and prayers for your family,
Kari

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

hi Wolfen,

sorry to hear about the blows to your family. you're a warrior.

any possibility that your husband can tolerate getting a PEG tube? with nutrition and hydration as important as they are...it might help with eating and blood sugar issues. and that would be less to worry about.

I don't know much about diabetes, but I have noticed that companies like Abbott* offer nutrition products for people with diabetes. "Glucerna tube-feeding products for institutional use offer a variety of nutrition choices for supplemental or sole-source nutrition."

depending on need, you may be able to get discounts and/or free supply for tube nutrition.

* I'm not associated with Abbott, but I use one of their other products.

best wishes to you and your family.

Skiffin16's picture
Skiffin16
Posts: 8219
Joined: Sep 2009

Sorry for your ordeal...again.

There are a few positives...

I think you made an excellent decision to let your daughter in on what's going on. Though painful, she needs to know and be involved..., an who better to know exactly what's going on, than her.

MD Anderson is another positive, for reasons you mention.

In my case, my ENT was my quarterback, and still is nearly four years out from his initial Dx. He has never dropped the ball..., nor my chemo onco, also excellent.

They both saved my live I am sure...

In your case, for whatever reason, your ENT has seemed to drop the ball... If nothing else, he has lost your confidense.

It's hard to remain positive, and get you and your hubby's mind set for battle if your have doubts...

Hoping you get the answers and confidense back with your upcoming MD visit.

Best,
John

phrannie51's picture
phrannie51
Posts: 4085
Joined: Mar 2012

I felt a wave of relief when you said you are looking into MD Anderson. You're right...ALL the people you need are there...it is a true medical center. BSB mentioned the drinks for diabetics...I don't know about cost, but since he's already having trouble with eating, and his blood sugar is erratic...they may be just the ticket. BSB also mentioned the PEG tube for getting nutrician and hydration into his system...I had one, too...it saved my bacon.

You have a lot on your plate, but it sounds like you are taking things as they come...and being an outstanding caretaker.

p

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to our little place in the sun....well not so much but welcome none the less. I know you must be scared and frustrated and maybe even mad right now but there are some good things going on. I know you will get the best of care at MD Anderson and a second opinion is a good idea. Another good thing is that you are so involved and aware of your husbands medical history and trust me, that is huge in getting good care.
Now I can't help you with the diabetes or heart issues except to once again say that MD Anderson will be your best bet for that.
One thing I wanted to say was that some insurance companies will cover canned supplements that are taken orally and most of them will cover formulas that are meant for a PEG(feeding tube), be sure to ask your Dr's to RX them.
I also wanted to say that I think it's a good thing that you told your daughter about what's going on. Imagine how she would have felt had she found out another way. And now she can be helpful and compassionate both because she cares and because she KNOWS first hand what he will be going thru.
Again, welcome to our club and keep us posted often.
Billie

Ladylacy
Posts: 586
Joined: Apr 2012

So sorry you are having to deal with this monster. A second opinion and a new heart doctor is definitely needed. You said your husband is on social security. My husband is too and his Nutren 1.5 is covered. My husband is on a Medicare Advantage Program and we have a co-pay of approximately $58 for 7 cases per month and they do have a nutrition feeding for diabetics. You will need a prescription from one of the doctors who is treating your husband. The ENT or the medical oncologist. If you are on Medicare and a supplemental insurance, you won't have to pay anything. Just be sure you use a supplier that takes medicare. Apria Healthcare is who we use. My husband has gone thru two different battles and each time had a PEG tube which was god sent for him as he wasn't able to swallow once radiation started. In fact he still has his PEG tube but hopefully it will be removed next month but swallowjng is still very hard for him.

Wishing you and your family the very best -- Sharon

NoDuck
Posts: 134
Joined: May 2012

But sorry you find yourself here again. Your cyber family is waiting with open arms to help you on this journey.

If your husband can get a PEG tube, Medicare will pay for all equipment and supplies, including the liquid nutrition. My husband had tonsil cancer and the PEG tube saved his life. He still has it 6 months after starting treatment and still uses it for the majority of his nutrition. The radiation will make your husbands taste buds wonky and make his saliva non- existent. Without the PEG, nutrition and hydration will be challenging.

Come here often with questions or just when you need a shoulder to cry on or lean on. Prayers for courage, strength and healing.

Deb

luvofmylif
Posts: 344
Joined: Sep 2012

I, too, am the caregiver to my husband and I know what you are going through,except you have more on your plate, because of your daughter. But, as others said this site provides major help to practical questions and also emotional support.

We, too had many delays in our treatment, but it worked out eventually and your situation will to. I know what it feels like to be the quarterback. You are your husbands advocate and will be for a long time to come.

I am glad you are going to a large center such as MD Anderson. I work at a hospital and originally was going to go thru an ENT there, but as I eventually learned by getting a second opinion, that the hospital I work at doesn't really treat this cancer. We went to a top notch university setting and eventually had transoral laser surgery followed by rads and chemo. Our treatment plan was much different because of this and I feel much more confident with the path we chose.

But, it will work out. Obviously getting your husbands heart condition treated takes priority. Getting all your ducks in a row is important and if you trust your medical team that means everything. Trust , but verify everything. Ask alot of questions and write them down before you get there.

Joan

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

Very sorry your family has been hit again.

I was not in the same boat - I thought I was healthy when I found out I had cancer. Shortly thereafter, I found out I was diabetic.

For nutrition, both before and after I got my feeding tube, I drank Enterex - a sugar-free nutrition supplement. It didn't have as many calories as Ensure Plus or the Carnation VHC, but I was trying to avoid sugar. I bought it by the case at Walmart most often, but I now understand that you can request your local drugstore or warehouse store order the stuff for you (cheaper that way - it never went on sale, and I never saw coupons for it). I will say, though, that I was the only one concerned with my diabetes during treatment - my docs said getting in calories was the most important - the formula I used in my feeding tube was loaded with corn syrup.

I think that the smoothies I ate when I could were relatively inexpensive. I mixed yogurt, a banana, peanut butter and protein powder (which I bought in big jugs). I got a lot of calories and protein in that way.

I hope you all do well.

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