Hi--I'm a new poster to this site. I'm a little slow on the uptake (no pun intended) and didn't see this Forum topic till today. Please bear with me if you've already read my inquiries under the Treatments Forum...

I have been reading your website off and on for 5 months, since the midst of my husband's chemo/ radiation treatment for HPV+ tonsillar cancer. It was a tough road, but he was progressing beautifully. The last treatment was December, 2012. Then the 3-month PET/non-contrast CT came back with worrisome spots on lungs. A followup biopsy has confirmed P-16 metastasis to the hilar lymph node of lungs. One small spot, less than a centimeter, (even too small for trial participation) but "terrible" news. (to quote our rad onc). We have two very conflicting approaches from two different centers here in the Baltimore/DC area:
[1. Wait 8-10 weeks and do a CT with contrast to see how it's behaving. If growing, begin chemo
2.] Don't screw around with it and start chemo now.

Thanks to some responses already received from other Forum members, and by listening to our own guts, my husband and I are going to pursue treatment. But I am still wondering if anyone else who has had a recurrence was advised to wait. It seems so counter-intuitive, and yet, one wonders?

Also, I can't help but think that met was already in his lungs when all this began, and it just was too small to show on the September 2012 PET scan. (its SUV was 3.3 or so in the March PET) Maybe it doesn't matter, but maybe it means it's only there in that location--and not all over.

My husband is going for a CT (with contrast) chest scan today. Since its been 9 weeks since the PET/CT (non contrast) maybe we will get an idea of how this thing is behaving.

Thank you for reading if you've gotten this far. Just writing all this is therapeutic. Any and all insights are welcome.

Sincerely,

Mary
_________________________

Personally, I have never understood the "wait and watch" idea. It seems to me most times you are just waiting to watch the cancer grow, which isn't just counter-intuitive, it is not bright! I like your aggressive approach, but I am curious about why the approach isn't MORE aggressive. Is there possibly a radiation option? If the lung met is so small what about a cyberknife, or brachnatherapy (spelling optional) or whatever type of radiation to the lung. It doesn't sound like that has been completely explored. Good luck.

Donna

[quote]My husband is going for a CT (with contrast) chest scan today. Since its been 9 weeks since the PET/CT (non contrast) maybe we will get an idea of how this thing is behaving. [/quote]This is the best situation. Wait a couple days and read the CT impression and go from there. If it has grown you know something needs to be done, from my understanding it is usually palliative, unfortunately. Since they were stained p-16+ then you know they are neoplastic so that should be no surprise. I guess the chances of it shrinking on its own don't seem very realist and even it shows the same size then what to do, right? Most likely chemo anyway. Why they don't do surgery in these situations is something I do not understand as yet.

FYI - I have had two nonspecific spots on my lungs and am in a holding pattern. I am HPV p16+ too. The first PET from Dec 2012 showed them. The latest CT done in March 2013 showed them, no change. During that time I went through three rounds of induction chemo TPF (Taxotere, CisPlatin, 5FU). The primary BOT and regional lymph nodes shrunk away completely and the final impression was "near or complete response", so the rational is if these spots were neoplastic and p16+, they should have at least shrunk up some; they were small less than 1.2cm with SUV less than 2. CT done after these rounds and the spots shows unchanged, so the logic is if it was neoplastic and p16+, in other words, the primary had metastasized to the lungs, then the response should have shown these to reduce or disappear, which did not happen.

So this leaves the diagnosis on these things with pulmonary which I saw several times and they could not put their determine anything other unless going in and doing biopsy but since they agreed if it was same cancer then it should have responded so it must be something else. So the question became how critical is it to know if it is inflammatory and or scarring and it was generally agreed to just park this for a bit and wait for the next PET and/or CT scan to see if anything changes. I agree in this situation it does not seem critical to take any more steps right now to further study these two spots. It remains a bit unsettling all the same.

Post back the report for sure. don

I heard of a h&n cancer patient, with lung metasteses in both lungs, have a resection via VATs procedure, and Tarceva afterwards, others I have heard using Erbitux or other targeted therapies, some long term. I think there were recent postings with lung metasteses if you go to search. Not sure if IORT or brachytherapy can be done, but worth a look. Good luck.

So we spent a few weeks trying to decide if the biopsy ( general anesthesia , etc ) was worth it since it was anticipated by all to be inflammation. Ironically the one doc who really pushed us to reverse course and get the biopsy is the same one who is saying wait 8 weeks and rescan. What the heck? In your case Don, since you have the strong evidence of no impact by chemo, you have concrete evidence to base your decision to wait on . Poor sentence structure there but you get my idea, I hope. Thanks for sharing your experience.

Thanks for suggestions Paul and Donna. have not come across IORT before, or tarceva pr brachytherapy. Will be armed for next visit.

D what you can now its small sake to see if it can be removed

The MO called with chest CT results last evening. The malignant lymph node doesn't even show up on CT, because it is still small. (hence the argument for not treating). Generally, this result seems good; there has not been growth in the last 9 weeks. If it weren't for the biopsy, we wouldn't know it was there.

Still, I am getting closer to that appt at Hopkins (trying to find a date sooner than July)

I don't know how helpful this response will be for you, but I offer it in the chance that it might be (helpful.) BTW, I turned 74 on the 10 of this month.

I started out as Stage IV, got one tumor removed surgically (actually, that led to the initial diagnosis,) followed by 6 weeks of trying to find the primary (in the base of my tongue.) Found that and three other Metastatic tumors in lymph nodes in the throat.) 8 weeks radiation with Cisplatin at 3 week intervals (3 dosages in all) and was clean. For 17 months.

Recurrence in the liver (distant metastasis, now Stage IVc) treated with Taxol/taxetere and Carboplatin for 7 cycles and clean again.

HOWEVER, the time from detection to beginning the treatment was lenghy, 4+ months. This included two liver biopsies and installation of gold markers as targets to burn the new tumor(s) out with radiation.

After all that, it was decided to treat with chemo as described above. I suppose that's because I'm considered incurable. In any event, it eliminated the tumors.

Next (and most recent) recurrence was again in the liver, only this time in multiple locations. This, 90 days after my clean report. This time we treated it with Xeloda, a pill form of FU5. I completed those treatments with a clean bill of health mid-April, and won't have another PET scan until late Sept.

I believe that you are getting good advice about waiting as for those with HPV association, the disease seems to be very slow growing, and even for those of us in Stage IVc, seems to be quite manageable. I know that in my case, it will eventually cease to be so amenable, but single, localized tumors do seem to present no immediate or emergency demands. In other words, I'd go with my MO's suggestion and not worry too much about it.

Bart-Thanks for your insight. You may be the first person to agree with that particular approach of watch and wait...and it helps to get alternate perspectives.

I will get to work on the "not worry too much about it" part next :-)))))) (they really need an Alfred E. Neuman emoticon up there on the list)

Cheers,
Mary

You're welcome, Mary. Sorry you (and your hubby) have to go through this, but it is what it is, life. In all it's glory.

Best of luck to you and him!

What, me worry?

Bart E. Neuman

Hi--I just wanted to update on this topic I started in May. It's been a whirlwind couple of months. (background: after getting news of metastatic spread to lymph node(s) of lungs, we were advised to wait 8 weeks, do another PET, and see how this thing behaves. No cure; only treatment) My husband had the 8-week followup PET scan June 19. The good news is that one of two bright spots is fading (subcarinal lymph node of lung), which seems to confirm biopsy result that that one is negative. However, the Hilar lymph node is still bright (SUV 3.3 in April increased to 3.8 in June), (and of course had been biopsied positive for malignancy in April). We have received 3 second opinions these last two months as well. The Hopkins MO feels this is a very slow growing thing; she wants to consider radiation with "Chemo light" to the area--trying for cure, not just treatment. We meet with Hopkins RO next week. They have treated 4 cases in this manner at Hopkins; 3 are currently in treatment, and the 4th has been NED for 6 months. This is a bit of an out-of-the-box approach that seems to be based on the following facts:
1. only one met (had subcarinal node been involved, chances were slimmer that they would try this)
2. metastasis apparently only in lymph system (not in blood) (as demonstrated by clear CT scan)
3. met is very small (under 1 cm)
4. I am not sure if HPV + plays into it.

So we have followup meetings with 2 of the 3 second opinion practices next week.

Best to all,
Mary

Good luck and do keep us posted.

Hopkins sounds like a good prospect so glad the news isn't as grim as you thought at first.. Fingers crossed for a cure. Hugs!

Best of outcomes! In situations like this, a a CCC known for cancer is the place to be. Sometimes I feel the "got to CCC" is a bit overdone in that a majority of the common HPV+ OC we see here can be treated by competent non CCC providers. Just my own opinion as one who got excellent service throughout outside a CCC system.

I think similar Don. I have local doctors, and ones at the top CCC hospitals in Manhattan. If I stuck with my local oncologist initially, as planned, I would probably be cured by now. Major CCC can be too aggressive, and was warned of this. It probably works in most cases, but not all, like myself. For complicated cases, a CCC is probably better.

Thanks for the well-wishes. Had appt with RO this past week. We were told that 10 years ago, this situation would have presented a whole different story re: treatment. HPV has changed all that, so to correct my explanation above, HPV obviously is playing a part in decision to zap this thing with radiation. Planning scan (simulation) next week. Paul and Don, to follow on what you said, we had amazingly excellent care at a non-CCC facility for the initial round of treatment (back when it was a slam dunk 80%-90% cure). If it weren't for this unexpected turn of events, there would not now be this need to move to a CCC that has seen many more such cases.
Best to all,
Mary

Just to put it on the record now that three of you have posted this. OCF's position is that patients should find the best institution, with the highest independently established ratings to be treated at. This is historically large NCI designated CCC's, that have greatest access to clinical trials, doctors that see far more patients with a particular disease than those in a regional hospital, and have funding for the most modern equipment, and so on. (Full disclosure on how hospitals are rated can be found on the US New and World Report Hospital rating criteria) There is peer reviewed published work (story in the OCF news feed) which has looked at the outcomes from these institutions compared to smaller regional hospitals, and those peer reviewed studies show superior outcomes from the bigger CCC's. This does not mean that there are not good doctors at smaller institutions, so do not misinterpret this. This is based on clinical outcomes, looked at through a scientific, non subjective process.

I could not be more pleased that the three of you had great outcomes, as many people who go to smaller institutions do. But when the crap hits the fan, and your disease takes an unexpected negative turn, I would like to be with a team that has seen that unexpected event hundreds if not thousands of times vs. just a few. I would like to have access to clinical trial drugs that are not available at smaller institutions. All that said, the bulk of people in the US do not have the luxury of getting to choose what their HMO, insurance region and carrier, or personal finance dictates. That is the reality. So, IF, IF, someone has the ability to go to an institution with a higher clinical outcome rating, and the assets to make that possible, OCF will always recommend that patients go to one.

[quote]All that said, the bulk of people in the US do not have the luxury of getting to choose what their HMO, insurance region and carrier, or personal finance dictates. That is the reality. So, IF, IF, someone has the ability to go to an institution with a higher clinical outcome rating, and the assets to make that possible, OCF will always recommend that patients go to one.[/quote]The reason I wanted to express my satisfaction with the non-CCC options is exactly your point. There are many insured under plans with limited options and CCC may not be an option. Many are under-insured and even uninsured - pushing for a CCC only adds stress and feeling inadequate and worse that will be under-treated or receive substandard car via other options.

This is NOT the case. Most, if not all, medical professionals and institutions in the USA follow standard of care guidelines. So, you will receive adequate care for all things "standard".

Even if you have access to a CCC via out-of-network options under your coverage, the financial costs can overly burden ones financial abilities. Some here are quite emphatic about going to a CCC, to the degree, one should be willing to go bankrupt to afford out of pocket CCC cost. I offer that one can get just as solid outcomes via non-CCC if you keep your eyes open and nose sharp.

In my case, having the run of the mill scc stg4 HPV+ with known BOT primary, it seemed fairly pedestrian for the typical ENT,MO,RO, etc. Even though my team was not under the same roof, it was a team and my case went through a tumor board just the same as a CCC. My request to attend was granted and it was very impressive to sit around a table of 15 professional, doctors and other med. pros, all fixated on my MO presenting my case and reviewing and discussing the finer points of the reports and diagnosis, etc.

My surgeon ENT did his fellowship at Memorial Sloan-Kettering Cancer Institute. My RO is individually recognized in the latest US News ratings. The facility where I received services is recognized by US News, just not a CCC and rated one notch lower mostly due to not being a teaching/research facility; vital if you have something unusual or where standard of care does not seem appropriate. My MO is the least experienced but very passionate about healing me and I know he did a lot of extra research just to ensure he was on solid footing. I am trilled with them all.

I'm just offering out to those that you can get great care and outcomes via non-CCC and as Brian states the reality in today's health insurance market puts CCC alternatives out of reach for many but that does not doom one to a death sentence. don

I'm not sure why we are having this discussion. Everything being said is a forgone conclusion. Go to the best place you can based on insurance, HMO and personal ability.

All things in the US are not equal, and some do not meet and treat to standards. In all things there is a bell curve, some great, some horrible, and the bulk in the middle. As to saying that any cancer is a run of the mill thing, I personally think that is a mistake. No one knows enough about it all when they get diagnosed to make that decision. No one knows if in their particular case something catastrophic is going to change in the middle of treatment. No one knows if they are someone that is going to be unresponsive to conventional established treatments and need something outside the box that may only be available in a clinical trial center. There are a lot of "no one knows" when you are a non medical person who just got a cancer diagnosis.

I don't think anyone here has beliefs that are outside all this until I read that someone thought that a CCC might "over treat a patient" That comment needed correction. More than that we all agree. We are all locked into certain choices given our services that we can afford, or systems we are in. That is the reality of the situation and in the US that is not going to change.

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.

We all have ways that we can learn from each other, and ways that we can inform, as well.

I agree with the most recent posts. Your presence is invaluable here, Paul. I have not been on the forum long, but I have been encouraged and have learned a lot from your posts.
Please reconsider. Your sharing of your OC journey, is making a difference in those who are just starting out.
Thank you.
Barbara, hanging tough caregiver & wife to Richard, the love of my life!

Paul, it saddens me to hear this from you. I know there are some that have gone through more than others but the powerful story you share gives each of us not only hope but determination that no matter how tough the journey has been, people like you and Charm dug deep and made it as far as you could...and then some. I stay away because I don't want to discourage others. My case is so rare, although much more prevalent than what I originally believed or was told. I honestly don't know if I could have fought this hard to stay alive as I did if it wasn't for you. Yes, I struggle with every breath and about every swallow these days, am on a ventilator type machine to make it through the night since my body no longer breathes automatically but, again, I would not be here had I not known about your story as well as Charm's. You truly inspired me to get up and live, regardless of what the medical community told me or believed. They said I wouldn't make it to October yet I rode 35 miles in the bike Friday and am entered in a 100 mile endurance race next month! You were an integral part of me being able to do this.

I don't get involved in the "prove it" discussions like you do. I could not take that on a regular basis as you do. I don't really care who believes me or not since I know what I read and I know what I did and I am here to prove it. My proof is me although I developed my own personal plan after conventional medicine tossed me out with the bath water. I read textbooks, studies, trials, etc., pertaining to cellular biology, hematology, radiation damage, nerves, motor neuron diseases, neuropathways, vascular disorders, digestive disorders, cachexia and a few other topics because I was told to lie down and die almost a year ago. I have a room full of stuff but at the end of the day, I eat lunch with high level oncologists and metabolic disorder specialists because I understand and talk their lingo. I did to help me but also to help them and spark an interest to study how to pull people out before they die. It is unacceptable that as many as 40% of the people that die during cancer treatment succumb to the treatment and not the disease. I will go kicking and screaming until someone listens. I am a lot like you. I have learned a lot from you always. It is very difficult for me to even type because of losing fine motor skills in my hands now and I can only imagine what it must be for you to type all you do at night...in the dark!

Never think your opinion is not valuable. I want to reiterate...I would not be here today if it weren't for you my brother from another mother. Your depth and breadth of knowledge on just about any topic totally blows me away!

You can clearly see that very few of my posts are even replied to except to tell me I did something wrong or don't know something. I could care less to be honest. I don't care if I win a popularity contest but pity the fool who disregards the message because of the messenger.

Ed

I'm back! I never really left. I was going to post the other day, but was busy with a few doctor appointments, blood test. All your comments brought a tear to my eye, not many rears lol, I have to keep strong, at least fake it. I want to appologize to Brian Hill, and anyone else I offended, and hijacking the post. No one insulted me, things have been rough more than usual, and my meds (diabetes) were off, BP, and needed to adjustment them, which is no excuse, and I should keep better contol of them for many reasons. Another is I can't say my next PET/CT is not worrysome. It's a major leap if clear, and a big set back, if not, and think about treatment options, which are very limited now, if at all, but will deal with it when I get there, It would be the first time in almost 4 years to have a clear scan after my 3 month post treatment scan, so was getting angry why this is so.

Dear Paul, we are all entitled to bad days, so, please, there is no need to apologize or explain your anger. It would indeed be too hard if on top of trying to cope with the disease, the harsh treatments, the plethora of side-effects that we also feel constrained when it comes to expressing o our anger, disappointment and frustration.

Those of us who have followed your posts diligently know what you have been through and personally, I have tremendous respect for you -- for your knowledge, insights and courage in the face of huge odds against you.

I have learned a lot of helpful facts from you but, more significantly, I see in you a role model, especially on days when things don't seem to go right and I am overwhelmed by grief.

I'm very glad you are sticking around. You add so much to this forum. And its good having another NYCer around. If you ever need anything that a fellow NYC resident could help with, let me know.

Paul,
I am very glad to see you posting - and best wishes for your upcoming scan.
Maria

No apologies necessary, Paul. We are all in this together. Everybody has good and bad days. Glad to see you are sticking around.

Great to see you posting Paul.I knew I could rely on you to give me some information on my post re HBO. You are incredibly knowledgeable and I for one appreciate that.
You look after yourself and I too am praying for fantastic results in your upcoming scan. Don't borrow sorrow from tomorrow.
Tammy

Paul,
Did not see this thread until today. So sorry but totally understand the ups and downs of being a cancer survivor, particularly one with such a difficult history. Wish you the very best on the upcoming scan. Everyone has to deal with the anxiety that builds up in advance of the next scan. Take care, don

I think everyone else has said it well. If any one of us has not had a day when everything seems to go south, they're probably not telling the truth. Glad you are still with us, as clearly you are much loved and appreciated by all of us. B.

I'm so glad that you are staying, Paul. When I first saw your post, I felt so badly and was trying to think of the right thing to say - Everyone else had such good things to say and all I could come up with was "Please, please stay!" Well, I'm sure glad you did!

Paul, I really think you should have started a new thread on this!

Man I was going to miss all your technical explanations of what I try to say in laymen terms!! lol

SO,,,as I was saying...... :-)

As of yesterday, we have a plan in place at Johns Hopkins (a CCC!) to treat the lymph nodes in chest with 6 weeks of radiation, with sensitizing chemo. The treatment starts in 2 weeks. It is generally anticipated to have far fewer nasty side effects than Round 1.

Paul, I too am glad you are back!

I will write more later, but I am hearing little footsteps scampering around upstairs, and a new day is beginning.

With cautiously expressed (though bursting with hope inside) joy,
Mary

Hopkins is an awesome place! Just voted #1 for 2013. I can't speak highly enough about the treatment I received there. The follow up is amazing as well. I rarely wait more than a few hours for an email response from someone on my team when I have a question.

Appointments, scheduling... everything has been on the ball with them. It instills a great sense of confidence when you have a team on the same page with you. Add to that the fact that many of the doctors, nurses and staff are some of the best and brightest in their fields.

You should feel hope inside

Positive thoughts and prayers,

"T"

Good luck with treatment!

I too was in the wait and see mode with my treatment team. ON the follow up PET for my first cancer (tonsil) they found a hot node in the middle of my neck left side. Wanted me to wait 3 months for another scan to see it got bigger or not. Well while waiting for that period during the second month I noticed a small bb sized node on the left side of my neck. After FNA came up recurrent SCC With met. to left side of neck. So I say with everything that I have read. to push for diagnosis.

Yup...

Hi ...I just wanted to check in and say that my husband completed the second round of chemo/radiation at Hopkins on September 21. The radiation was directed to the chest area. The chemo was weekly doses of carboplatin. The side effects were NOTHING compared to those from the round of chemo/rads he had to treat the initial tonisillar cancer last winter. The doctors feel optimistic, though I am fearful of taking anything for granted. On December 30 we meet with the RO to get PET scan results and learn how all went.

Best to everyone,
Mary

Mary, thanks for checking in! Im very glad to hear your husband got thru his second round with ease. Now, on with the recovery phase! Best wishes with the December testing.

Mary I understand. I too am fearful and do not take anything for granted. I don't think the worry ever leaves, though it does abate a bit. The nature of a recurrence I guess. So glad to hear that this round of treatment has been a bit easier on your Husband and hopefully you too.
Take care you two,
Tammy

Good luck.