I know this is a tough question but I've had a growing discomfort with the information and recommendations being given my sister. She has no insurance and a local organization (CSICP) is covering her care. Her doctor discouraged her from using Amifostene - saying he didn't think she'd need it. They haven't said one word about a PEG despite the fact she has already lost five pounds and cannot possibly afford to lose a single pound more, and no one has talked to her about medications for mouth sores or skin problems. (Is that something they wait bring up till you have the problem?) I keep reading how many people felt the PEG was necessary and I'm just concerned that they haven't ever even mentioned it. Is it possible the fact there is no real insurance to pay for this stuff is affecting recommendations or is it more likely the doctor just doesn't see the necessity of going there yet? It seems that both the surgeon and the radiation doc downplayed the side effects to virtually nothing which went against a lot of what I've read here. I know everyone is different but I'm just feeling concerned. So far the only side effect she has is a rough feeling mouth (after 9 treatments). Thanks for any thoughts and advice!

Hi Robin,
Any doctor that downplays the effects of radiation is either not familiar with the broad range of side effects it brings or they simply don't care. My doctors kept telling me, over and over, "we're happy you're feeling better from the surgery, but we're going to make you very, very sick again with the radiation". The medical field is all about money, of course it makes a difference that she doesn't have any insurance. She should have a PEG and she should have been told long before now about medications to treat mouth sores and skin irritations and burns. Tell her to ask one of the nurses or the radiation techs, they have free supplies there they can give her. I used aquaphore and they gave me a tube of it for free. She needs someone to fight for her and make sure she gets the proper medical attention.
Good luck with it all!
Minnie

Hi Robin...

I'm sorry to hear about your sister's diagnosis, but she is fortunate to have you as an advocate for her care...

Remember, I am NOT a Dr or lawyer, so take my words only as friendly information to support you and your sister's relationship with her health care professionals.

Amifostene has VERY serious potential side effects, and depending on stage, cell differentiation, location; dose, type and duration of radiation...it may not be worth the risks.

As far as PEG, my understanding is that the weight loss threashold is around 10% overall body loss to trigger a PEG, although mine and others are done "just in case".

I don't know enough about the mouth sore meds you are thinking about, but in general, discussing meds far in advance of their need is always intelligent health care planning.

To me it sounds like she is weathering the radiation well, but you are right to be concerned about her care...

Regardless of the health care professionals' motivations,(even if they were Mother Theresa, working for FREE), medical personnel are just as susceptible to human flaws as any of us...

They might be tired, distracted, or financially motivated in ways that affect their patients' care...

I had one at an early consult continually look at his watch, and I asked: "Are you pressed for time?", and he said, "Well, Yes, actually, I have a job interview in an hour..."

Most likely, they don't even know the true nature of your Sister's insurance details, maybe just that she doesn't have group care, but they might not know dozens of other factors that affect her ability to pay, not pay, or tap into the hundreds of 3rd party sources for subsidy.

I think that your concern is one of the reasons I decided to seek care under a CCC since their shear size dillutes ONE person's ability to make care decisions based on ability or inability to pay.

Truth is, even with the BEST INSURANCE in the world today, Drs and hospitals are far from assured of payments of their exhorbinent charges.

Insurance companies deny, deny, deny, then delay, delay, delay.

That is their MO. Also, if a care provider (and certainly most any hospital) has a contract with a particular insurance company to be a PPO provider, then they get usually a fraction of the total billed for almost any proceedure, medicine or charge...

So, providers bill outrageous rates sometimes knowing that insurance adjusters are going to pay a percentage (mostly based on preestablished contract charges for certain proceedures, etc).

(sometimes unethically used as a nice tax write-off of "losses" for billed services never paid in full)

This in turn makes insurance companies scrutinize their bills (bill review), which in turn makes providers bill more, and as you can see, this is just one tiny part of our terribly flawed medical system.

But, it's still the best in the world.

The only way to ensure the premium best treatment is to be filty rich and/or famous, and even then, it may only be a marginal motivation for any one health care provider in particular.

I realize this is WAY MORE than you asked, and truth is, you can find dozens of entire books written on your topic alone.

Bottom line, you (and most importantly your Sister), need to be able to trust your health care provider(s)...Some sketicism and questioning is VERY healthy, (I believe), and the leader's in their fields usually appreciate this, but it boils down to the relationship you have with someone whom you (or in this case your Sister) trust with one's life.

Most of the people I've met (and I've met dozens in the last 3 months), have been caring, compassionate, intelligent and hard working professionals who have literally dedicated their entire adult lives to fighting this disease.

I think a lot of the loosers are automatically filtered out by the process and naturally go on to other fields.

Sorry to ramble...Guess it's all the vitamins I took (OH, Don't get me started on Vitamins!) :-)

Minnie & Michael: Thanks for the response. I went to her monthly checkup today and asked the ENT specifically why so many people on here are saying the PEG was essential to their survival and why no one has even mentioned it to my sister. He seemed totally surprised and said he's never seen a young, otherwise healthy person not be able to get through radiation without a PEG. He said if my sister was 75 or had major health problems he'd recommend it - and he did say if she lost a lot more weight they would do it. I told him about this website and that I thought the majority of people were not really very old at all. Anyway - we'll see how she does in the next week!

I was going to take a 2 week vacation but I felt inclined to chime on this. First off Michael is absolutely correct about amofostine. Many here have tried it and the side effects and adverse reactions have make them very sick and/or have to quit. I should also mention that if she is getting IMRT she probably won't need it as IMRT will spare of lot of the healthy tissue. Some of us have done it without a PEG, me for one. I am very grateful that I didn't get one but my opinion is not for everyone. Some here owe their lives to the PEG. It's typically the RO that insists on a PEG, my head & neck surgeoon didn't have any strong opinions either. It's the RO that sees the side effects, followed by the oncologist.

Side effects from radiation vary from person to person. Salivary gland tumors are not seen here very often and it's hard to guess what effects she may or may not have and what you read here is often the worst case scenario. Sometimes I wonder how I got off so easy.

Unlike Michael, my HMO moved as quickly as possible to expedite treatment, moving me to the head of the line constantly. I never waited more than a few days for a test result and often had MRI's and PET scans within a day of the order.

If she hasn't started treatment yet I am confused why she is losing weight now!?!?

If she has no insurance and doesn't own property she could qualify for Medicare or the State variation (Medicaid?) of it. CCC's will work with you - get her into one of those if at all possible.

Gary: She is on her ninth treatment and having some sore mouth issues. She started losing weight right at the start because of some stomach virus. I guess my concern was seeing the huge amounts that some people lose on this forum and she's five feet nine inches and she weighs 115 pounds. I'm already concerned with her weight and couldn't understand why her doctor wasn't. I found it interesting what you said about your doctor not being real pro or con regarding the PEG. But even her RO never mentioned weight loss as a potential side effect. SHE doesn't want to get the thing and I hope she doesn't have to. I was mainly concerned that possibly no one was mentioning all this stuff because of her lack of insurance. She's not getting IMRT but the RO did say he thought the saliva glands on the other side would be spared - perhaps that's due to the type of cancer she has and the area they're hitting. She's on a variation of Medicaid but I mentioned here before you can't get Medicaid in Colorado if you don't have kids. She has none. What she's on is almost like a voluntary organization where doctors and hospitals donate their services to people with no insurance and no money. From what I understand, the hospital won't see a dime for any of the treatments.

Robin, I was treated 4+ years ago on a standard (XRT) machine. I didn't have chemo or Amifostine. I was never told about tube feeding. Certainly it was a challenge and I did loose weight. My opinion about PEG tubes is well known and if you search here you'll find the posts where we have done battle on the subject. I don't wish to explore that here or now. No single subject gets people more riled here than tube feeding. In fact, it gets people more riled than all other subjects combined. If you are interested I have several blender recipies for her to make her own high nutrition drinks. (Send me an e-mail) Weight loss can be related to stress as well. It becomes a full time job to stay hydrated and well fed.

Take care

Hi Robin,
Everyone can get through radiation without a PEG, many on here have. My thought has always been....why make it harder on ourselves? Also, having a PEG put in when you are sick from radiation and chemo is tougher then doing it before treatment starts. I had a PEG so can speak from both ends of the issue, trying to eat during radiation and the ease of having the PEG to keep my self well hydrated and up to par nutrionally. I recall very well trying to eat during the 3rd week of radiation, it was horrible and I am thankful that I had the PEG. I didn't have to worry about nutrution nor have to spend hours per day trying to get enough nutrition into my body.
Mine was put in during my surgery a full 6 weeks before my radiation began and I begged my doctors to remove it about 3 weeks after my surgery when I was eating so well again. They refused to, told me I would be thankful for it during radiation and for a few months after radiation. They were absolutely correct. I was 41 at the time and in great shape, no doctor ever told me I wouldn't need a tube.
Hope it works out for you,
Minnie

Minnie, If I read your post correctly about everyone can get through radiation without a peg, I gotta beg to differ During the 6 days in hospital, recovering from surgery, John could not even stand the smell of food out in the hall, much less in his room. Had his peg not been inserted during surgery, he would have lost a ton of weight before the rad txs ever started. Add to that the effects of radiation, without the peg, I don't think he would be here today. No wonder this is such a controversial subject! Amy

Minnie's point is well taken but the opening sentence is just wrong. Not everyone can get through radiation without a PEG. But the essence of her message is correct, why struggle, slow down healing, deal with pain that isn't necessary, and much more if you don't have to? The PEG in the overall scheme of what gets done to us is a walk in the park. Hiding it (taped to your belly under your shirt when you are not useing it ) is easy. While there are some here like Glenn etc., that have toughed it out without one, my perspective is this is all tough enough. Why add yet another issue like the pain associated with trying to eat when you mouth feels like it came out second place in a hatchet fight, or healing slowly do to inadequate nutritinal intake if you don't have to? Anyone afraid of this procedure is putting an irrational fear of it and minor compications that occur occasionally in the way of the profound benefits of having it.

And while I am on that soap box, people that post here that they (even proudly) state that they got through it all without one, by promoting the "I toughed it out perspective" they do a disservice by forgetting that we all come to this disease with different stages of the disease, different abilities to tolerate discomfort, even different levels of fear tolerance, and different amounts of oral mucositis sores, et. etc. . I have respectfully argued this point with Mark in many previous postings. They are still here, with all the jabs and passion for each perspective for anyone to see, as he says via the search engine.

Funny thing about your above posts, Brian. I just PM'd a long time member on the forum to ask if going without the PEG was some kind of Badge of Honor I didn't understand. Altho my John has griped about the peg alot he has been thankful that he could get electrolytes, pain meds and nutrition thru it], the only really scary time was a few days ago, when his shirt was covered in red blotches and I thought he was bleeding. It turns out that he had not put the gauze pad between the peg and his skin and the strawberry shake he had for lunch was leaking through. Ruined his shirt and my appetite for dinner. And so the debate goes on. Amy

Oral mucositis is a common side effect of cancer therapies, particularly radiation therapy for head and neck cancer and various forms of chemotherapy. It commonly results in severe oral pain that can compromise the duration and success of cancer management. Hospitalizations are common because patients lose the ability to take anything by mouth due to severe pain and must have alimentation supported during this period. Pain management usually requires potent narcotic analgesia. Cancer therapy-related oral mucositis is commonly described as the most significant and debilitating acute complication associated with radiation therapy and chemotherapy. PEG systems are ABSOLUTELY NECCESARY for many paitients. This is something to be decided by the treatment team in conjunction with the patient. It can not be judeged by others with dissilmilar reactions to treatment.

Brian,

Now you have sucked me in! I took our own advice and did a search on the PEG issue so I could clarify my position on the matter. It has, as you know, been more of an attempt at balancing the obvious need for some and the ability to do without for others. I am not now, nor have I ever truly been entirely opposed tot the PEG. You know me better than most here, I like to balance discussions. The post I found was my progress rep after I completed my first radiation treatment. There were a few, but this one seems to do it;

Author Topic: Post treatment update - Progress report
GRE1
"Above & Beyond" Member (200+ posts)
Member # 431
posted January 09, 2003 12:42 PM

Like I said in those original posts with you Glenn, you are one tough guy, a really nice guy, but a guy's guy kinda tough. You don't work as a cop in the big apple without having some brass balls. My guess is in a test of tolerance of physical discomfort, or even just plain desire to tough it out and get through something, I would always place a distant second to you. And I agree in principle, there are some people who can get through this without the PEG, depending on the degree of damage to their mouth and their ability to stay hydrated and properly nourished.

The problem is for most patients, until they end up in the ER with dehydration, or until the loss of lean body mass and slow healing becomes painfully obvious, damage is already being done. While some get weird about the idea of having a PEG ( I posted on my initial feelings about this a long time ago, and my irrational perspective of this vision of myself with a bag hanging off me was a no denial realization that I was really sick, which is a weird realization for someone who already at least didactically knows they have cancer ) I think that anyone who veiws this very minor procedure with trepidation (especially given radical neck dissections and the other genuinely painful things they do to us.... their fear of it all is misplaced. So we don't come to blows in a dark alley one day, let's make it clear that doesn't mean i'm calling anyone who is fighting the idea of a PEG a pussy.... but your mom does dress you funny.......

Brian is correct to admonish me for my opening sentence. It was wrong and I should have thought it through. For that I apologize. I have always felt like I was being called "weaker" to have had a tube by some posters, even though I don't believe they intend to make anyone feel like that. My comment was intended for that scenario, meaning that it's not anything to brag about that you got through radiation without a PEG. Of course there are patients that HAVE to have a tube and it was irresponsible of me to have posted it that way.

Obviously the PEG is a touchy subject. I didn't mean to stir up controversy. I would think if you need it you should get it, if your doc recommends it, you should get it, and if he doesn't and you don't end up needing it, then you should go without. My concern was simply that no one had even mentioned it and due to my sister's very low weight for her height going into this, I was getting the feeling that it might be a cost issue to the docs and hospital vs. a what's good for the patient issue. Anyway - I appreciate everyone's input. Hopefully she'll make it through all right and if not, they'll have to stop her treatment and put in the PEG.

Hi Robin,
I feel very selfish that you feel the need to apologize to us. You didn't stir up any controversy, we did.
To answer the very simple question you asked, yes, I DO believe that lack of insurance can create a lower level of care. People WITH insurance have to fight for many procedures, I can only imagine the battle people with none must face.
I hope your sister can do without the PEG and,like you said, if not they can insert one during treatment.
Keep us posted, we do care.
Minnie

Robin,

Just a side note, Harry did not get his PEG until he was almost finished with the rad txs. He only agreed to it when the doc told him it was no longer an option. But he did not stop txs to have it put in. As a matter of fact, that evening they took him down to do his rad tx as scheduled.

I offer this so that you will understand that not all cases will require that the txs be delayed for the insertion of the PEG.

Also, the RO told us that he considered Harry his last patient that he was going to allow to go that long. He told us that he has decided to have future patients get their PEGs prior to the beginnng of txs in order to avoid the problems that seem to surface in most patients.

I have noticed more and more new patients here that I have also spoken with on the phone are getting their tubes prior to tx and I suspect that the protocols are changing in that direction.

Lastly, the PEG procedure is considered out patient which is significantly cheaper than an in patient hospital stay even though they will likely keep her for a 23 hour observation. Don't know if that helps but I thought I would just throw it out there as extra information.

Best to you and your sister.

Cindy

Minnie & Cindy: Thanks so much for the info and your opinions. I do find this site extremely valuable and I admire every single person on here whether patient or caregiver!