The patient is my 85-year-old mother who had surgery in 2000 for tongue and neck tumors. it was followed by radiation and all was successful until a recurrence in 2005. She refused the suggested radical surgery-removal of part of the lower jaw and had minimal scraping and hoping. By 2006 there was further recurrence but she refused further surgery. This was right after Erbitux was approved for oral cancer and we tried that. It was amazingly successful in reducing tumors and in fact by summer of 2008 she was tumor free. there were side effects from the meds, however, including skin and eye irritation, tiredness, dizzyness, nail and hair breakage, sores--life issue effects as opposed to severe incapacitation.
The doctor took her off the meds for a break and she felt better, but the tumor returned and she is back on the drug.

Symptoms have arisen again-skin and eye irritation, tiredness, etc.

We are looking for any suggestions about relief from these side effects and also side effects from the original radiation. her most significant complaint is accumulation of phlegm that she cannot get down or get up. this is probably due to not having any saliva. she has tried various artificial salivas in the past but none has really helped her.

Thank you for any assistance that can be offered here.

Best,
Marsha

Some here have gotten a suction machine for home use.

thank you for the quick reply. does anyone know the name of the suction machine? are there different ones? better or worse?

I so appreciate your taking the time to write back to me.

Marsha,

I didn't need one but many here have and hopefully they will help you. I'm sure his oncologists can help you as well.

This was a recent thread on the same topic:

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=84658

I have actually seen medical suction machines ( various brands) for sale on ebay.... if you think this is for you worth a look. Be really careful we these, the reason some doctors don't like patients to use them is the damaged tissues in the mouth are really delicate, and you can actually do damage with a suction machine if you are not careful. But lots of people here have used them without issue.

I rented one from Apria Healthcare and this was set up for me before I was discharged from the hospital - so I'm not sure of the whole process. I don't remember how much it cost each month but I'm sure there are other places to get them from. I didn't have any issues with mine and it was a lifesaver at some points - I was best friends with my suction machine in the hospital. It also helped with the mucus from radiation (although toward the end I became really good at just hacking it all up!).

I have a portable one from Apria Healthcare and it is covered by insurance. Runs somewhere between $25-40 a month. I think Medicare will cover the purchase of one which is around $400-$500. You will need to get a script from your doctor. You would want a portable one so she could take it with her if she wanted. The free standing ones are huge and cover an entire end table. I unfortunately did not have this when I had the mucous, but think it sure would have been a great help.

Take care,
Eileen

Marsha, Hi,
I have been off line for a little while, but read the above tonite. I have a very good suction machine that I would be happy to loan you for however long your Mom might need it. It worked wonders for my husband [same issues your Mom has} and another OCF member has used it to good relief. You can call me at 870-257-4625 or 870-856-5455 to talk about it and I will be glad to UPS it to you. My hubby was also on Erbitux for an extended period and we dealt with many of the side effects your MOm is expweiencing. Erbitux is a challange to handle! Let me know if I can help you. Amy

Hello Marsha, Some of the symptoms you describe are similar to those caused by diminished thyroid output. Do you know if your mother has been tested regularly for thyroid hormone levels? Thyroid problems are quite common after radiation and are common amongst older people.

I am glad to hear about erbitux.....I had radaition, 7 weeks and erbitux, 7 treatements and still feel bad.....tired, can't eat and loosing weight but still no signs of tumors! so far