My dad is stage 4 SSC of tongue, 14 of 77 lymph nodes malignant and a couple with broken encapsulation.

Had surgery in July which seems to be the only thing on this journey that went without complication.

Treatment was to be 6-7 weeks cisplatin (weekly dose), with 35 IMRT concurrently. He also participated in a clinical trial for Panitumumab.

After week 4, his blood counts took a huge nose dive. They stopped treatment - but he still was not recovering and was hospitalized for 11 days. His ACN got down to 100 at one point. Needless to say he had transfusions and neupogen shots galore.

Counts got back up enough to resume a revised treatment plan (no clinical trial, carboplatin instead of cisplatin) but his red counts tanked again after 1.5 weeks.

Stopped chemo all together now, gave another transfusion - and just want to focus on finishing last 6 rads.

His white counts are still fine post hospitalization - but he feels and looks like he did when they were low (not at their lowest, but bad).

I am so worried that the cancer has already spread - but they are afraid to say that yet or do any other testing until he finishes the radiation.

Any thoughts, advice or suggestions are most welcome. I've learned a lot reading these boards but can't seem to find anyone who has had this type of bone marrow reaction.

Thanks!
Alicia


Also-
He does not have a feeding tube. Has lost about 25# since the start of treatment. Drinks carnation instant bkfst and ensures - as many a day as he can, but no where near what it should be. He says fairly hydrated bc he goes in for fluids regularly.

Hopefully the surgeon got all of the cancer, and the rads and chemo is clean up. Ideally it's best to get all the chemo, but some do fine without the last dose. I missed mine which would be equivalent to 2 of the weekly doses. I had a week they had to delay it because of my blood counts - its normal. Your dad sounds super sensitive to it. Paul B here on the forum has had a simia issue with his chemo way back. So they're giving him Erbitux this time. Sending prayers your way!

Alicia,

Boost VHC, which you can order via Amazon giving credit to the OCF, has 560 cals in the same small can as Ensure so by drinking the same number of cans he can perhaps double his caloric intake.

Did they test his cells for HPV? Was he a tobacco user?

He can also get a nasal tube (no surgery, just a 3 minute feeding the tube down the nose into the stomach) and that can GREATLY help you and him get tons of calories and water into him painlessly. I had one for 2 weeks and it was a godsend.

Listen don't worry about anything else right now other than completing his Tx and getting past the few weeks post Tx which are usually the worse weeks for all of us. After that, we call it walking out of the tunnel, his and your recovery will start.

Alicia,

I actually had this reaction to cisplatin after my second round of chemo and was admitted to the hospital for a week and given several transfusions to correct the problem, which finally did and I was able to finish my last round of chemo and the rest of my rads.

Your dad needs iron and due to the metabolic reactions from cancer, treatments, and emotional stress his body isn't absorbing nutrients like it should be. When the bodies immune response is activated, the triggers responsible for activating the immune system also inhibit digestion and absorption. This is further complicated by the emotional response to having cancer and going through treatment, which elevates the bodies cortisol levels. Cortisol counteracts Insulin, also leading to digestion and absorption issues so when you are looking at a cancer patient in treatment, you almost have to think of them like a diabetic.

With that being said, would you feed a diabetic high fructose corn syrup? Would you give them a nutritional supplement that (isolate vitamins and minerals) the body has a very difficult time absorbing and causes the liver to work harder? That's what happens when you're relying on these meal replacements to deliver nutrition to a cancer patient due to what they are made of. They are also horribly low in protein (15% generally) a macro nutrient the body of a cancer patient needs a lot of due to the immune response increased need for amino acids during treatment.

Your dad needs easily absorbed iron, pure Cacao powder that you can pick up in any supermarket is one of the best sources of easily digestible iron you can find having 1.8mg of iron per tablespoon of cocao powder, or 10% of the DV. Personally I'd break out your blender and start blending meals for him that are high in good fats like flaxseed oil (extremely high in Omega 3 fatty acids that help with insulin resistance among many other benefits), fresh greens, fruits, high uptake protein powder like Whey, and cacao powder and water.

Keep your chin up, hope that helps.

Thank you so much for your words of advice and encouragement. This can all get so overwhelming so fast.

Young Frack - I went right out and got some Cacao powder. He was good at the beginning about natural food smoothies and juicing - but since his hospitalization he just hasn't been motivated. I got him to have a smoothie this morning - so small progress there!