Hello all,

Just a quick question for anyone who had a lump in their lymph nodes... did the lump getting bigger during treatment? My husband is 2.5 weeks into treatment and he feels as if the lump is getting bigger. We're not sure if it's because the radiation/chemo is making the cancer angry or if it's just not working. Someone mentioned doing another PET scan 1/2 way through treatment, but when I asked about it the other day the radiation oncologist said that they will do one 3 months after treatment, as the inflammation from the radiation would show and the results wouldn't be accurate.

Thank you for any input.

Jeanne

Jeanne,

The answer is Yes! It sounds like an inflammatory process from radiation. It has happened to me, about the first two weeks, and the mask became so tight, but thankfully it began to loosen, but so did my weight drop too! Then I had to be carefull about the weight loss, so no new mask was needed to be made, and treatment stop temporarily. I lost aout 30lbs, that treatment.

Some trials have PET scans mid-treatment, maybe to decide if surgery or continued treatment is best or testing other matters. I did not belong to this trial or any trial group, but I heard about them.

Very rarely, wouid a tumor grow during radiation treatment, but it’s best you mention this to the radiation oncologist, and staff. Sometimes they cut eyelets out for the eys and mouth to help loosen it, if they can, and/or give medication to help with the swelling.

Thank you Paul. Hopefully it's working. He's just now going to pick up some Ensure for his feeding tube, as swallowing is difficult and painful. He hasn't lost any weight as of yet, but I'm sure it will happen. The mask was so horrible for him that he has to take 2 mg of Ativan to get through it every day. They did cut the eyes and mouth out for him, but it is still too claustrophobic for him. So glad you made it through treatment! It's promising to read the story of others who have gone through this.

Jeanne,

HPV positivity is the biggest positive prognastic factor we have for this cancer in the oropharynx, and elsewhere in the head and neck.

I was looking through your posts, and would definitely suggest you find find out the HPV status, as most are positive in the oropharynx, as mentioned, like the base of tongue and tonsil cancer, 70% of the time, maybe even higher depending on geographic area. It sounds like they haven’t done the test yet, but thought most do now? Sometimes they test for the biomarker p16 positivity, but this does not always prove HPV positivity, although most are, the next step or direct test for HPV, like HPV-16, a positive prognastic factor.

I was never tested in 2009, although testing was available at my cancer center then, but I fell through the cracks, and it didn’t really matter then, but now they have clinical trials, if needed, and better prognostic factors, maybe minus any smoking history by pack years. They should keep the biopsy slides for a number of years on file, I thought 7, so they can still find out the test results. Later on it can prove difficult to get, may be needed, so it’s better to ask now.

On another note, i think it’s good your husband has a peg tube, I did. He can always not use it until it’s needed, but it wouid need still to be flushed, and oral/neck exercises maintained wether he uses a peg or not. These days, they want most patients not touse a peg tube, but that’s decided on an individual basis.

Good luck

Thank you. He's never smoked a day in his life, but was a drinker and had plenty of exposure to second hand smoke his entire life. They're ASSUMING it's HPV related, only because when they tried to perform the P16 test, they were unable to get any living cells out of the lymph node tumor. Everything in it was necrotic. They haven't gone anywhere near the tongue to do any testing that way. They just pushed him right into treatment. He's only drinking Ensure right now, as everything else going down his throat is too painful. We meet with the radiation doc this afternoon. Hopefully she's able to prescribe the PEG tube stuff so our insurance can kick in. As you all know, Ensure is very expensive. We don't have any Costcos around here. Very small town with a grocery store, Walgreens, and Walmart. All of the info you provide is very helpful and much appreciated. If you can think of anything else, please share. He's having horrible neck spasms too. Not sure if that's from the radiation, dehydration, or some other cause. It's most painful when he gets into bed at night.

Jeanne,

As far as the peg tube feeding, for one treatment, I received cases of glucerna for free being I was 100% dependant on them, but another time, different doctor and center, same situation, I received none for free, but l didn’t know or ask either about them for free. I guess knowkedge and little cooperation goes a long way! It was $60 a case back then for glucerna, and needed a prescription from the doctor to get them for free, and be 100% dependant on tube feeding. There is a medicare/medicaid ruling on this.

There is also a webpage (Inspire head and neck cancer or Oley Foundation) where former patients or their family donate their unused and unopened peg tube cans to those in need, but you may have to pay the shipping, sometimes not. There are expiration dates in them too??

Tell the doctor about the spasms. He or she may have a quick answer! Dehydration can do a number on the body, so that can be one area. I always try to correct what is in your control. Does he sleep on an incline bed? I do, and couldn’t do without it, and for one time period, I needed to sleep in the recliner for several months almost upright!

I hope this helps, and more power to your husband through treatment!

Thank you Paul! They prescribed him some Flexeril for the neck, but it's not helping. He's had massage, Reiki, chiropractic, etc. and nothing seems to help. Hopefully it will pass.

We have Anthem Blue Cross for insurance. I'm hoping they'll kick in for the PEG tube supplement. I guess we'll find out this afternoon. :-)

I added the incline bed and recliner to the post, if that wasn’t tried.

Jeanne,

Have you checked amazon.com? If you use the link in the right sidebar on this page, OCF will get a donation for everything you buy from Amazon. Can you go through a dietitian to get a prescription from the doctor who treats your husband. That may mean you may be able to get Ensure for free?

The doc can write prescriptions which get filled at medical supply companies. There must be prescription version of formula for glucerna... ask the doc. The insurance company should cover not only the formula but also all supplies including the drain sponges, paper tape (thats the one I use and think it works best), the joey pump and bags to go with it. Some insurances do better than others with what the final patient cost is. My supplies would be well over $600 a month which I pay only $46 and change every month. Back when I worked, I had the very best insurance. Back then it covered every single item at no cost to me.

If you have months where supplies are starting to run low, try The Oley Foundations patient exchange program. It used to be only $16 for S&H to get a case sent. That sure beats a few hundred for a case of formula!!!! I once ran low on bags and was quoted $300 for a case of bags.... thats absolutely crazy paying $10 a bag for each plastic bag. NOT me!!!

Heres a couple other things about tube feeding just in case... Some formulas are easier to tolerate than others. My stomach is very sensitive so Im only ok with a couple different formulas. Some people have other medical issues like they're diabetic which is important in deciding what formula to prescribe. If the formula bothers the stomach, add a half can of water and slow down the delivery rate. Slowing and watering down the formula will fix almost all issues patients have with their upset stomachs from using formula.