I said a major CCC can be too agressive, not over treat the patient, which may be inferred the same. My opinion from personal experience, one which turned out not that well, and another worked out better at two different CCC. If my initial treatment worked out, I would say the opposite, but I can't, and as a result of my mishap, I have been fighting this same disease continiously for 3.8 years with 5 recurences, and the side efeects, including severe anemia, and stage 4 chronic kidney disease, and lost count of all the doctor vists, tests and scans, why, because I went with an aggressive treatment, and could not do any further treatments for 1.3 years due to nearly dying. I should have heeded warning when the ENT, RO, and intern there said I may not get chemo, and would leave it up to the MO, who said I was fine, and not only did I get chemo, I recieved more than most get in 7 weeks in 5 days, called TPF Induction Chemo, even that looked higher then what was the protocol, but chemo is based on weight too. Maybe it did save my life? I don't know, but it almost killed me too. My current CCC MO said in all his years in practice, i think 25, he never seen anyone respond to IC the way I did, so that is my short story.

It makes sense anyway a CCC can be more aggresseive, they have more expeirence in more advanced treatments available, training, etc. A community hospital is more conservative, I believe. All have postive and negative aspects. I just would never assume again that a CCC is always best for my situation haveving goitten burned once, literally. I still go to a CCC, and have my 12th PET/CT scan next month, and all my follow-up visits with the MO, RO, and ENT there.

Paul, respectfully, many of us have had lots of long term issues as a result of our treatments, and continue to, 14 years out like myself. I bitch about them in private, but I know full and well that if I did not do everything I could as a very advanced stage 4, bilaterally metastasized late stage find, I would not be writing this to you today. I had to take a poison pill that just about killed me to destroy the thing that was trying to kill me. Welcome to cancer treatment.

If you are sure there is a direct cause and effect in what has happened to you, including your many recurrences, then you have a legal case you should pursue. I do not think that it is a trait of CCC's, to be overly aggressive as a group, nor particularly cavalier in their understanding of the consequences of what they do to us. For sure it can seem like a big machine, and I certainly felt like the "person" Brian Hill was not being treated, but my disease was. But I'm going with the end justifies the means.

Your story, and many others that were particularly difficult, is common to institutions and patients of all sizes and skill sets, and stages of disease. I don't think it is fair to brand all CCC's with the light of being aggressive. I think that institutions both large and small try to follow the NCCN guidelines. As good as those are, since they are a compilation of what the big CCC are all doing and works the best, not every patient responds the same way to them. Guarantees in cancer treatment are not part in parcel of treatment. Assurances that you will not be one of the people negatively impacted by the treatments are not given, as none of us is biologically uniform to the next person, hence the informed consents that we all sign. I am giving you both my personal opinion, and that of the foundation. I also have an obligation to state what the peer reviewed publications find, and they find better outcomes at the bigger CCC's. Does that mean that every patient, at every CCC, has a better outcome? No. But the data says that their chances of a better outcome statistically are better.

I didn't want to highjack the thread, but will respond to your resposne. I just joined this site last July, and knew it existed back in 2009, and never joined. Why? Because I don't complain to anyone, and how many times did I in over 1,000 posts here? I also don't ask for any advice, and rarely did, if I did at all, and only try to help by sharing my expierance, and give advise in laymens terms, including links to studies, others.

Also, I dont think anyone one has the side effects I had from just chemo, if any, and if ghey did they are probably not here anymore. I also don't see many that had 5 recurrences, three neck dissections, two which were radical, radiation 3x with over 130Gy, two sperate chemo treatment, and this was for tonsil cancer, "in situ", but was stage 4 due to the lympoh nodes. I can say I was not disfigured per say, but can see a physical differeence like the "saddle" nose fom low blood pressure, and eye lid closing from the visipn loss, and two doiffrere nt eye colors. Mine re were blue, buy the one woit vision loss changed brown from the blood, and now tha pupil is white too.

Now I'll complain, and excuse my typing becaise I dont see well, and share some of my side effects while being hospitalized for 6 months the day after my chemo treatment discharge, and put in ICU, including losing 110 pounds in several weeks, parayhlzed from the waist down, and unablee to walk for 10 months, let alone stand, which I could not, blinded permamantly in the eye, almost losing total vision, all by hair cane off, which is no big deal, scabs on my head, lost all my fingernails, toe nails, burns on my face, hands, inside mouth and esophoghus. The burn unit had to attend to my hand and face burns by removing skin, and don't complain of continued side effects, some I won't share, and then including the stage 4 kidney disease, almost a few points from stage 5 now, and the chronic anenemia, constant neuropathy, and muscle paraylsis still in my legs, and I think i have it pretty good.

These are some of the ailmets I had to fight through when hospitailzed for 6 months just from 5 days induction chemo, no radition was given then, and being in isoloation, which is not fun either. Just one of these can be deadly, like sepsis, which has a 40% survival rate, as does dissmeninated candiassis, both which i had. It Took over 3 years for my beds sores to heal, and are still not.

Abdominal pain
septic shock
sepsis
respiratory failure
pulmonary collapse
pulmonary congestion
On respirator
intestinal disease
excisional debriment of wound,burn
disseminated candidiasis
unspecified septicemia
periumbilical abdominal pain
hypotension
drug induced netropenia
urinary tract disease
pleural effusion
hepatomegally
gastric dysfunction
gallbladder disease
ulcerative colitis
pneumonia
cardiomegly
unspecified volume depletion
low potassium
kidney disease
hyposmolality
nutrional marasmus
debility
dysphaigia
phlebitis,
systemic inflammatory response syndrome
erythematosquamous dermatosis
ulcerative gastrointestinal mucocitis
antineoplastic immuno supprs adverse effect
anemia
iron meatbolsim disorder
shortness of breath
localized inflammatory process whole body
unspecified infection central venous line
critical illness myopathy
brain ishemia
other ascites
joint pain
cellultis,
mononeurotis
gait abnormality
pressure ulcer
rhinoschleroma
conjuntivitis
diarrea
nausea
hypovolemia
blood transfusiona
renal failure
low potossium
acidosis
leukocotosis
Optic ishmeic nearopathy
Neovascular glaucoma
Eye surgery
Minimal hearing loss
Tinnitis

As far as a lawsuit, it's not my style, plus I was too sick for all these years to thoroughly look into, and did not want to discount the hoputal, in case it was needed to go back, which I did for several surgeries, but never saw the oncoligist again, who left the hospital for anoter.

One thing I have to say in all this Paul is that you as far as I know you had an underlying issue - diabetes - which could very likely have effected the way you responded to treatment. With diabetes, as I am sure you well know there are kidney issues, blood toxicology issues, circulatory issues etc... Making your case in particular far more complicated. There is also likely a personal sensitivity to chemo that was probably very much enhanced by the diabetes. So you are the 1 in a million in a lot of ways, since your response to chemo was far from average. When dealing with cancer, aggressive is generally what you want. Your drs of course need to consider any underlying conditions - but they are usually in a difficult position of what is too little in terms treatment when dealing with what is normally a very aggressive cancer, to avoid just the scenario you have faced... Multiple recurrences etc...
One thing I have noticed here is that there is always a fail rate amongst members, this is for varying reasons, individual habits and diet, overall health and individual anatomy, and aggressiveness of the cancer, but one disturbing pattern is that people who's drs tried to minimize treatment for whatever reason, tend to have to face the demon more than once.

Hugs....

Right Cheyrl, they did not consider or underestimated any underlying issues, including the diabetes, which i dont think was the main cause, high BP, chronic anemia, and G6PD, which can possible make me reactive to medications, illnesses, certain foods even, due to oxidatve stress. These may have been acclerated by the chemo, and would not have been brought out for many years ode deacse. The doctor figured I looked good, he said that, and I was phsycically strong also, so I would be fine. He said we are going to hit this, and hit it hard, and will cure it. I thought so too. Before I was diagnosed, and reason it helped push me to look into the swollen lymph node, is that I had surgery for an abcess two months before, and caught MRSA in the hospital, and was then hospitalized for 20 days, and given all types of meds for it, transfusions too, due to hemolysis from the G6PD. The CCC knew that, and they put me in isolation as a precaution during my chemo, so my chart says for MRSA. Anyway, before that I had all the work ups for diagnosis with contrast CT, which I cant have anymore, PET/CT, triple scopes with biopsy, including a salivary stone removal, so more medications. I'm not saying CCC are bad, in fact they are very good. I'm just defending my statement that they can be agressive in treatment, which may be good for most cases, but not mine at that time, but was good for my latest treatment in Aug., oct./Nov, and you have to be aware of what is good for you. Maybe there is a better word than agressive? I knew that it was more aggressive than was proposed by my local oncoilogist, who is also my hemotologist, and knows my history better, but disclosed everything, and wanted the best treatment, so I thought, and did not proceed with my local oncologists recommendations, but I didn't expect this outcome, and underestimated it also. I did not have any kidney disease before that, and my creatinine was fine for years, no eye problems and didn't even wear eyeglasses, except for driving, and had an eye exam by coincidence several months before with no problems, no neuropathy, and just had common ailments that many have these days. I went from being active, working, exercising all my life, to being homebound, which still am, can't drive anymnore, can't walk far, and I'm only talking several blocks, if that, cant see well, can't work, ahve no energy, get out of breath fom the anemia, and still have muscle pataylsis. It would be fine if the chemo, and what I went through cured my cancer, but it didn't, and it's not easy going through one tretamanbt, but I had 5 recurrences having to go through the same procees 5 more times with the worry, testing, waiting, dr vists, reasearch other consultations and treaments or surgery. As mentioned, i have my 11th or 12 PET/Scan next month is the real test, since most post treatmant scans are clear anyway. I'll gauge my progress on this next one, which never was good in 3.8 years.

With induction chemo, I believe there is not much time to gauge a reacation to it, in my case, as opposed to weekly or three bag treatment over the sourse of weeks. After IC, in the hospital, I walked out carried my big duffle bag, even exercised in my room during mytay, doing push-ups, and all, even lifting to room chair like weights lol, but I was weak, and felt it in my legs. I didn't have them wheel me to the door either on discharge, and refused, and the type of guy I am. When I got home things started getting worser and worser, and went to the local hospital by ambulabce, and for me to do that, it has to be bad, since I;m aand a very independant person my whole life. I go to all my dignises, tests, whatver by myself., No one ever had to hold my hand for anything. I also wonder how many here did not recieve their 3rd big bag chemo, many, and wonder what would have happened to them if they recieved the 3rd bag? I think of my situation is similar having had that 3rd bag per say, and then some, with chenmo that most do not recive in 7 weeks were done in 5 days. I had TPF Induction Chemo, which was controversial, still is, due to its high toxicity and death rate. I believe it was not on the NCCN guidline then, and may even had a warning for its use, and NCCN did not recommend it when looking at them is 2010 or 2011. Now it's in the guidline under certain circumstances. My local doctors said I was given too much chemo. When I had recurences my local oncologist would say, You're not going back to that place that almost killed you lol, and I knwo she would rather treat me, and only reason I go to a CCC is for the ENT, surgeries, and RO, not really the MO, but they want me to stay at one place.

The reason for my multiple recurrences is that I did not have any curative treatment after my chemo reaction of only 5 days, which was supposed to be done in 3 cycles, followed by 7 weekd chemoradiiation, and we know chemo doesn't kill cancer, and only until 1.3 years later did recieve radiation. I could not be given chemo then nor after several more recurrences. My ENT said if I was able to complete treatment, as originally planned, I would be cured by now, but now have persistant cancer. When I was hospitalized no tests, discussion were made for cancer treatment, it was to survive the many deadly ailments, and was not expected to live. I eventually decided to go home, against the doctors advise, and several months later was able to be wheeled into my local oncologists office, so for 8 months I just thought what the cancer was doing, spread, and had no communication to anyone except, my doctors, and my family visting. No internet, no cellphone, no support groups I belonged to. I never even had a discussion with any other cancer patients, let alone Tonsil cancer, being I was in isolation, and unable to walk for a long time, 10 months, which I'm sill looking into, and then hen you just dont jumo up, I had to learn how o walk again, and still struggle walking two blocks. I did join FB, located a support group on-line a year after diagnosis, and then I found my case to be very unusual than others, even my treatment, and all along thought this maybe happened to all cancer patients, which then prodded me to getting all me records, and didnt even know what Chemos I received, and question what happened.

I researched, and crossed referenced all my ailments, medicationa with the Induction chemo I recieved, and does seem questionable if I should have recieved that when a lesser chemo or no chemo would have had a better outcome for me. Several doctors thought I may not get any chemo at all, but was leaving that to the MO. One reason why IC is copntroversil is somtimes it prevents patients from completeing curative treamant, which happened to me, plus the tocity, and death rate.

During my 5 days of hospilization, I was bombared with medications, especially insulin, and chemo, which probably contributed to my bad response, and was like the perfect storm, and brought out thinks that may have taken years to profress, but happened overnight. I may have even caught another infection, rather I know i did in my 6 minths, or the MRSA I had was not fully cleared, but tests showed it did. As I said before, I'm reactive to certain medications, illnesses, even foods due to oxidatuve stress, which causes hemolysis, and has happened before having gone into twice septic shock requiring hospilization, and domino effect. I'm anemic my whole life, no big deal, but it worsened.

These are the medications given to me, not counting others I was taking.

Permacath Placement
20Mg IV Dexamethasone
Insulin Aspart 18x in variuos dosage
Insulin Gardine variois dosage 9x
12Mg Ondansertron IV 11x
160Mg Cisplatin
1610Mg Fluoracil (5-FU) over 4 day infusions
160Mg Taxotere
10Mg Ramapril 6x
150Mg Atovaquone Oral susp 6x
5 Mg Zolpidem Tab 2x
10Mg Oxycodone 7x
80MG Aprepitant 4x

The real difficulty is that we are all unique. No matter how many trials or how much data is gathered, there will always be those the fall outside of the statistic confidence interval, assuming normalcy. I remember the nurse and pharmacist outside my infusion room arguing whether the last dose of Cisplatin would kill me or not. I remember the Otolaryngologist clearly telling me he would cure me or kill me. I remember my mask fitting so loosely after the cervical spline block was attached. I remember feeling the heat of the mask on my neck during the last week. I remember a strange smell somewhere in the top of my head that reminded me of bleach and how it turned to a burning flesh smell the last week of radiation. I remember all the docs post treatment that told me I was the only one to experience what I am. I remember as my breathing ability started declining the pulmonologist telling me I just needed to try harder to breathe. I remember the docs finally telling me what was really going on and nothing could be done to help me other than just waiting to die. I remember them telling me to medicate out when my legs stopped working last December. I remember riding 35 miles in the bike last Friday!

My doctors tell me often I was aggressively over treated. I was told to accept the treatment prematurely aged me by 30 years. I just say WHATEVER. If we just knew what factors we bring to the party when treatment plans are devised and how they might affect treatment...well this would be a walk in the park. We don't but if they could just find funding @ about $171/minute to research this I believe it would be huge not just for us but for breast cancer patients as well.

[quote=Brian Hill]Paul, respectfully, many of us have had lots of long term issues as a result of our treatments, and continue to, 14 years out like myself. I bitch about them in private, but I know full and well that if I did not do everything I could as a very advanced stage 4, bilaterally metastasized late stage find, I would not be writing this to you today. I had to take a poison pill that just about killed me to destroy the thing that was trying to kill me. Welcome to cancer treatment.

If you are sure there is a direct cause and effect in what has happened to you, including your many recurrences, then you have a legal case you should pursue. I do not think that it is a trait of CCC's, to be overly aggressive as a group, nor particularly cavalier in their understanding of the consequences of what they do to us. For sure it can seem like a big machine, and I certainly felt like the "person" Brian Hill was not being treated, but my disease was. But I'm going with the end justifies the means.

Your story, and many others that were particularly difficult, is common to institutions and patients of all sizes and skill sets, and stages of disease. I don't think it is fair to brand all CCC's with the light of being aggressive. I think that institutions both large and small try to follow the NCCN guidelines. As good as those are, since they are a compilation of what the big CCC are all doing and works the best, not every patient responds the same way to them. Guarantees in cancer treatment are not part in parcel of treatment. Assurances that you will not be one of the people negatively impacted by the treatments are not given, as none of us is biologically uniform to the next person, hence the informed consents that we all sign. I am giving you both my personal opinion, and that of the foundation. I also have an obligation to state what the peer reviewed publications find, and they find better outcomes at the bigger CCC's. Does that mean that every patient, at every CCC, has a better outcome? No. But the data says that their chances of a better outcome statistically are better.
[/quote]

Brian, your words hit so close to home with me. My second opinion was MD Anderson. I knew going into it that it would be tough and I jumped in knowing there was little time to really make the informed decision I wanted to. I have had that nice consent form thrown at me for many years now and that finger wagging that I fully knew of the risks yet did it anyway. I was even told the cancer was killed just as they said. When the most senior radiation oncologists were gathered in one room for my last visit there I knew they meant business. Instead they literally chucked me out and encouraged me to seek out alternative treatments outside of mainstream medicine.

I believe there is an underlying assumption that if you get me through this you will help me forever while I am alive. I have found that the research cancer centers do not do this very well and I accept it is a funding issue. I just didn't think there would be no options available from the experts that got me to this point in life. Cancer aftercare is nearly nonexistent although many of us could certainly do a lot to help further the cause. I even proposed a model using only physical therapists and nurse practitioners and with a $750,000 startup grant from Livestrong. It was laughed at because there was no revenue stream. Focus has always been on treatment first prevention second. I am still hoping we find something to bust the "one size fits all" paradigm as well as establishment of aftercare centers for cancer survivors. I will push for the last two till the day I die. I will do all I can for OCF because I truly believe the organization and specifically YOU will take every opportunity to further this cause as well. Thank you for what you have done and what you will do!

Now I have said more than I want, and really don't sfeel uncomfortable with saying what I probably wouldn't ay at once, maybe a few dribbles here and there, but didn't tell you everything and even uderestimed what I have said, which I usually do with everything, but you have a pretty good explanation for my statement of being treated agressivly, and do not like having to prove myself, for what? but as such, you can remove me from this group, and will be moving on. I can't find how to do it.

Paul NO. please stay. Many here need you as do those still to come.
I'm sure no one meant to upset you. Please just take a few days to think,on this.
You are an incredible man. We know you have been through too much.
Tammy

Paul,

I agree with Tammy - please stay with OCF. Your knowledge and advice have been valuable and appreciated. As I read your journey I realize you have been through much more than I have and so there is little advice I can offer you, but I'm here to offer moral support.

Emotions can run very high on support forums. I do find that some people can be very opinionated on here, but I feel everyone is trying to be of help.