Hello everyone, please excuse any newbie errors since I'm new to this board, but I'm not new to cancer. A little background info since I don't know how you add that.

I was dx in 10/09 with SSCN of the tonsil, base of tongue, valleculla, and three bilateral lymph nodes. I received TPF..taxotere, cisplatin and 5-FU induction chemo for 5 days, which hospilized me for 6 months, and unable go complete the rest of treatment. A PET scan was finally done in 7/1o, and amazingly came back all clear! Two months later, I had a recurrence in two left lyphn nodes, and ultimately 35 IMRT treatments completed in 3/11. Not chemo since oncologist refused due to my confition, and prior reaction. Follow up scans and FNAB in came back with cancer remaining, plus a new lymph activity. I had a radical neck dissection in levels Ii-V, neck muscle, vein, artery on 10/11. Pet scan all clear a few months in 2/12, but in 4/12 another lymph node was discovered. Surgery to level V done on 6/22/12. Two days before surgery, another swollen lymph node was discovered in level III and removed during the scheduled surgery. Pathology shows both SCC, no clear margin, and the mass/tissue, unsure now if it was a lymph node, had perinueral and Lymphovascular invasion.

Oncologist may do Erbitux, since i can't take chemo due to kidney, and immune system. Radiation oncologist said he can do 50Gy to levels III and V, having already 60 Gy to that area. He is afraid of artery damage and damage to the brachial plexus nerve. Surgeon is not confident he removed all the cancer beitwain was on the artery and afraid of damaging it. medical oncologist said I would be disqualified fir most clinical trials.

Sorry for the long intro. Looking to see what anyone else did for a 3rd recurrence, Reirridation or anything else helpful.

[quote=PaulB]A little background info since I don't know how you add that.[/quote]
Adding a signature is easy. Just click on My Stuff (at the top of the page) and scroll down. You'll see the box to add signature information. Common abbreviations you may see in other people's signatures can be found here.

And welcome to OCF -- the best place around for information and support. There are several people here who have had multiple recurrences -- you can start by looking for posts by ChristineB, one of the admins here.

Thank you. I' ll try. I made it this far, so it's not too bad.

Welcome. I have had two occurances both with surgery and radiation following, but my time frames were much extended from what you have endured. With the second cancer I told them to hit me with their best shot and they did, but your cancer sounds much sneakier! One of the things about this cancer is that we are all so different. Keep posting - I am sure some will soon post who have better advice for you.

Donna

Hey Paul... We know each other from facebook and cancer sucks. I was going to comment on what you posted there - in fact I did but lost it - very frustrating.. - I know you have a big decision to make everyone here will likely give you their opinion. But I'm going to lob mine in your direction. - recurrences are just another way of saying we didn't get it all - in dr speak. Since they have already told you that they aren't sure if they got it all this time either the do nothing option is off the table is you want to beat this. So your only other options are rads and chemo, (In your case Erbitux) or a combination of both. Chemo - Erbitux will not kill this alone. - and rads by itself is great at doing what it supposed to in the area that is within the field and spray radius - but any microscopic cancer outside that area will not be taken care of - that's why they use chemo.
It's the housekeeper that gets what everyone else missed. Erbitux is meant to work in that fashion. I totally understand your ambivalence but I think to effective treat this you need to do both.. Please ignore the other odds they are throwing your way - frankly drs never give you a yes or no answer as they never know for sure and they always tend to lean towards worse case scenario. If you flip the numbers you were quoting with regards to the carotid and nerve then that will off you more clarity I hope - that's a 90 % - 75% that you won't end up with the nerve damage or a blown artery. Still way better odds than the potential 0% that comes with a serious cancer dx. Hugs...
You will get through it.

Paul, welcome to OCF! Im so sorry you are going thru another recurrence!!!

There are a few members like Pandora and Charm who have had radiation twice. If you are not being treated at a major NCI cancer center than I would suggest go to one as soon as you can. They are most familiar with treating difficult cases like yours and may be able to have something else you can do. I would still suggest you go to a CC for a second opinion, there are some in Philadelphia and also in Baltimore, I think also in Boston. Check out the list and please try not to let location be what makes your decision.

Ive had oral cancer 3 times and Im very fortunate to be here. I credit the OCF's founder, Brian Hill and the members of this forum for helping me get thru that last round. I almost refused treatment but they helped me to see that I couldnt give up without at least trying to get well. I know its a hard road with difficult choices to make.

Cancer Centers

Paul

As you can see from my signature, I had 72GY the first time and was told then, the safety standard was 77 max for all radiation TX total. But when my radiation oncologist saw the pathology report of perineural involvement (PNI)on the recurrence, he said that Cyberknife has a much better focus than IMRT so he could safely target the tumor area without too much additional radiation damage to the already irradiated areas.
Plus with CyberKnife's accuracy they can increase the amount of radiation. With IMRT, I got an average of 1.8 GY for each of the 40 sessions. With CyberKnife, I got an exact whopping 5GY a session for only 5 sessions although each session was one hour. Plus the Cyberknife moves around continously that entire one hour to bombard the areas with about 12x more angles each node than IMRT can manage.
It cannot hurt to ask your radiation oncologist about CyberKnife although it is more commonly used for prostate and lung cancer and brain cancer due to it's accuracy and ability to stay centered on a tumor despite the patient's breathing or swallowing during the session. My TX was at a CCC; the Lombardi Cancer Center in Georgetown hospital in DC

Charm

Thank you Christine. Sorry for the late reply. I thought it was linked to my e-mails, but I'm not tech savvy. I go to a major teaching hospital in NYC. Not sure if I can mention names, but the abbreviation is MSSM lol. I will try to post my pedigree info like you all have to make it brief, so I figure the Dx,Mo, RO, Tx stuff out lol, but I can wing it, and refer to a kind posting explaining it all.

Thanks. That was one of the first things I asked about, cyberknife. They do, only recommend IMRT, and IGRT only. I may consult with others, and don't want want to commit myself to 50Gy for 5 weeks. You renewed an interest.

Hi Cheyrl, we keep bumping into each other. I was burned once by chemo, and it was so horrific, that there is no thought of doing it again. Erbitux is the only option, but I have to go to my original oncologist, and see what she says, and why she said no to chemo several times, and Erbitux, but I think I already know the answer as was told, .my health, kidneys and immune system are poor, which I hate to admit. As per the new MO at a very populat teaching hospital in NYC, they are not even sure if Erbitux works by itself, no chemo for that matter i hesrd for orohpharynx cancrt or Erbitux after surgery? There are still trials goin on. No EGFR testing is done prior for the K-RAS gene mutation for H&N cancer, but it is for Colon/ Rectal. I got sidetracked lol. I had every possible ailment from TPF..taxotere, cisplatin, 5-FU, and could not walk, stand for 10 months, and no doctors ever seen or heard such a case as mine, at least lived to tell it. I'm blind in one eye because of chemo, lost 100 lbs and reminded daily through the pains, but doing much better than 2 years ago. The carotid artery is a concern due to the weakening of the artery wall from the two surgeries.. I'm just not convinced enought yet. They dont't hsve to wine and dine mevto chsne my mind, but give a liitle confidence to help. Called Memorial Sloan Kettering. Have to fax, mail everything. Go to my hospital Monday to sign off HIPPA form for records, slides. Tuesday, I hope to go to my old, she is younger than me lol, oncologist, who has a personal interest in me, and is also my hemotologist for a blood disorder. Wednesday, I see the ENT to get the stitches out, and see what he says, but I'm sure will not commit. Also, I plan on calling my old RO, even though I was turned down for rads, but I think she will still consult with me, and will update her on the latest findings. I'm even tired of writing this lol.

Thanks for your input as usual. I really appreciate it, an your suggestions will help weigh in on my decision making.

Thanks Donna. You are so right, each Cancer, and person, even hospital and doctors experiences are all different. This Cancer is persistent! I'm even getting confused with the recurrences.

10/09..Dx tonsil primary, BOT, Valleculla, 3 bilateral lymph nodes. Had induction chemo. Too sick to complete treatment, in hospital nursing home 6 months.

7/10.finally able to get a PET..Clear! 5 days chemo in 09 killed everything

10/10 Cancer free was short lived, it's back. two left lymph nodes, one which was new

2/11 35 IMRT, after teeth removed. chemo denied

7/22 30 HBO treatments did to infection, abscess, necrosis in jaw, back molar

7/11 Cancer still in left lymph node, another new one left side. Chemo, radiation denied

10/11 radical left neck dissection levels II-V. Cancer found in neck muscle removed. Chemo, and rads denied.

2/12 All Clear PET scan!

5/12 Cancer returns to level V. Lymph node or roaming cancer, had RND, so not much left. Two days before surgery on 6/22 Another cancer was found in level III left neck, and removed during surgery. Pathology says no clear margins, and perineural and Lumlho vascular invasion. Cancer likey to return. Chemo, Erbitux, rads denied by RO, and MO.

6/12 seeking other options. MSSM will do Erbitix, IMRT

I made a mistake, I had 4 recurrences, who is counting.

Well no matter how many times - it is definitely far too many. If it was me, I would take every option offered - chemo and radiation. Hit it as hard as you system can handle - seeing as it is such a persistent beggar. Good luck with your decision. Hugs.

Donna

Thank you Donna.

Paul, your case is almost similar to my dad's. He had SCC on Left Tongue - went for Operation, Chemo-Rad (Cis x 6 wk + 60 gy rad) first time and had all clear PET in 2009.

He got second recurrence in 2011, went for TPF (induction chemo) but it failed to shrink tumor on his right neck node. Went for radical surgery but no clear margins so he went for another 60Gy of radiation on right side only.

Another PET after 3 months showed persistent tumor and a new recurrence in neck level V. He was on Gefitnib 250 mg till his death (26 May 2012) due to cardio-respiratory issues and blocked right carotid artery due to radiation. He did not die of cancer but the treatment took toll of his body.

If you decide to go for IMRT, you will have a very hard time. Discuss the odds of surviving just on Erbitux with your Medical oncologist. With agressive treatment you may increase the quantity of life but at the cost of quality - A very hard decision to make.

I am just speaking out my mind, apologies if I have overstepped.

Eshwar, You definately did not overstep! That's the advise I'm looking for, honest! At this point, I need to know the good, the bad, and the ugly. I'm sorry about your father. They don't tell you theses other things that treatment does, which scared me the most.

To be honest, I'm fearfull of the radiation the most now, ven thougn I had a bad experience with chemo, so now Erbitux is suggested. The MO said I could do it alone, but what benefit, he doesn't know, but it's my choice. something may be better than nothing?

Yesterday i sent all my papers to a hospital here in NYC For a third opionion, hopefully I here from them soon. Today, I'm callin my old RO, and MO for advise, even though they both said no, I think they will help. Wednesday I go to the ENT to take my stitches out, but he is from he same hospital where new treatment is suggested, and said they could not help me decide.

Thank or you help, and I appreciate it very much.

Hi Paul, I was in a similar position to you back in 2009. I had a very aggressive recurrence with 6 tumors bilaterally in my neck and around my left jaw. I was originally told that it was inoperable and that I was not a candidate for further radiation as I'd already had maximum grays in a treating a previous recurrence. I was initially told that the only treatment option open to me was chemotherapy, which might slow the cancer but not get rid of it. After much discussion amongst many experts my surgeon agreed to surgically remove as much of the macroscopic deposits as was safe, and then I would have a 3 week hospital stay, receiving Cisplatin weekly and having IMRT twice daily. We did not have cyberknife in Australia and I don't think it would have been an option for me anyway given the wide area that needed treatment. I had to sign lengthy disclaimers in relation to the risks involved with having the 2nd round of radiation TX and these risks were death (carotid rupturing short term and increased risk of blockage long term), quadraplegia, nerve damage and many, many more. I was an otherwise healthy 51 year old at the time and I remember telling my RO that if it bought even another 6 months then it was worth any side effect that might come my way. Strangely the biggest side effect that I actually got I don't recall being discussed with me and that was completely losing all function of my saliva glands and my ability to eat. MY epiglottis doesn't function efficiently and I have very stiff muscles in my throat and neck, so I have a permanent PEG. I also have problems with my speech. Even with these side effects there is not a day that goes by that I regret having had this surgery and treatment. Nearly 3 years later I am still here and for that I am grateful and was very lucky. Any time I had a whine about pain or other side effects my RO used to remind me that I was very lucky to be alive. After the fact he told me that even with treatment they had my odds at less than 10%. Without TX they were 0%. I'm so very glad I lucked out and they were prepared to be very aggressive with my TX.
I know your decision can't be easy given you have other health problems, but I don't think that you would be offered the TX if there wasn't a chance that it would be effective. I hope I haven't scared you too much - nothing about this cancer is easy - but despite everything I have a good quality of life and I make the most of everyday!

Eshwar, it's good to see your posts again my friend and I'm sure all of your wisdom is much appreciated. I've missed you my friend

Eshwar, I am also glad to hear from you.
Maria

Thank you very much Sue. It does not scare me. I have been through hell, almost died, in ICU for a month, hospital 6 months, blinded, paralyzed, lost 100 lbs, and intebated, the bed sores took 2 yesrs to heal, just from 5 days of induction Chemo, so I'm vety cautious, and not as optimistic as I was, but I did pull through in one piece. I was thinking the same thing as far as the hospital wanting to do Erbitux, and radiation is a postive sign, but sometimes they are too agressive, risky, as I personally learned.

I'm glad you were able to pull through. I'm still undecided, and my original RO, who I just spoke to, thinks its aggressive at 50Gy. She and her partner are gong to look my case over again, and let me know what she thinks. I trust her more than the bigger, well known hospital, which did the induction chemo, which others drs think was a mistake. I'm the type to watch out for, since things seems to happen to more to me, and more severe than others probably due to underlying medical conditions.

I wonder what dosage they gave you the 2nd round? I read he 2x day fractionated IMRT has less toxicity, able to give more Grays, up to 80Gy, but read for Reirridation it is not better than once daily. The RO won't do less than 50Gy. I asked about cyber knife, and it's really IMRT, I think just the programming is different. Anyway, they don't do it here. Don't thinks it's a Sandard treatment yet, they do IGRT, which may be a little bretter than IMRT, and can do that too. Brach therapy is not done here, and RO doesn't think it would be any good. I have a number of good hospitals in NYC, but you have to send Everyhing just to set up an appt. I did sendvitvto Memorial Slosn Kettering, which is the number two cancer center in the US, at least by US Business Report.

Your story is amazing, and definately will factor in what you said. I can't take Cisplatin, which I had, due to my kidneys now.

I have a friend who recently did brachythera[y in one of the major NY cancer centers. I will find out where she was treated and let you know. The brachytherapy according to what she told me was not as bad as she expected and she now feels very hopeful that the cancer is finally gone.

Thank you Christine. I think it's Beth Israel that does Brach therapy. I asked about it during a consultation at Mt. Sinai, but they do not do it, and said he believes it woud would not be good in my case. I think I recall Brach therapy having less toxicity, but is more direct to a smaller area, like prostrate, but it is being used for H&N. Then they also can do additional RT. I plan on calling them tomorow. They are well respected for H&N, as well as two others I didn't contact yet. I'm working on borrowed time since I was supper to let the hospital know by this week, if I was proceeding.

Hi:

I had Brachytherapy done at Beth Israel Hospital in NYC by Dr. Louis Harrison. I have been told he is one of the best in the country.

Brachytherapy is a form of radiation where tiny rods are placed at the site and radioactive material is placed into those rods for a few days and left there, or it can also be done as a daily outpatient treatment for some. I was inpatient.

I was a third time re-occurrance and was stage IV.

My cancer was to my tongue and base of tongue. Had surgery, radiation to left neck (it was actually re-irradiation since I had the right neck done 2 years ago).

I then had brachytherapy to my tongue and base.

Maybe you could first call Beth Israel and get that that department to see if brachytherapy is done to lymph nodes. If so,I would advise to have Dr.Harrison review your records to see if you would be a candidate.

If you are a candidate for brachytherapy, I will be as helpful as I can with my experience, should you have any questions.
It was not anywhere near as bad as I thought it might be.

I've read articles now where this is becoming another treatment option for breast cancer and prostate patients and is on the rise.

Believe it or not, brachy was invented in the early 1900's and is now becoming more popular again as another treatment option.

Best to you! Sending positive thoughts!

Cindy

Thank you Cindy. I will call Beth Israel tomorrow. Did you have IMRT or Tomo in addition to the Brach treatment? It was actually not my Lymoh nodes, they were all taken out from the neck dissection in October. It was "free form" Cancer that came from nowhere. Basically metastised from the primary or unknown regions. That surgery in October revealed Cancer in my neck muscle, which was removed by chance being it was twisted around the lymphs, so I had a RND, instead of a MND.

I just called. I spoke with John, and will have someone call me tomorrow to set up an appt with dr Harrison or Dr. Hu. Thanks again,

Best of luck, Paul. I'm so sorry that you are having to go through all of this. You must be a fighter to still be with us! Keep coming back and keep fighting! I hope things start to go your way.

Be well,
Kerri

Thanks Kerri. I have an appt on Monday to see about Brachytherapy. Two Ro's said they may not be able to do it, but to check it out. I have two offers, one locally and other 1-2 hrs away, each, darn traffic in nyc, to do Erbitux 1x a week, concurrently with IMRT at 50Gy. My local oncologist, was verym upset with he path findings, I go to a major hospital in addition, believes this Cancer will not go away and will kill me, so controlling it is the key to survival. Said I may need to be on Ernitux indefinitely and or at least 6 months, then spoke briefly about a clinical or off trisl drug. At least I still have a few options. My ENT, told me Wednesday, that his leaving the hospital for private practice in another state, and was the last time I would see him they have someone else, but he did all my surgeries, and was with him for 2.8 years.

Hi Paul:


Sorry I did not respond sooner. My Father just had a pacemaker placed yesterday and I also just returned back to work so I am juggling a bit.

I had IMRT and Erbitux simultanously.

3 weeks later I had the brachy. The rods were in place for 5 days then I was all finished. It healed up quickly for me.

If you see Dr. Harrison or his Fellow, Dr. Berlach please give them my regards.

Please let me know how your appointments go and stay positive.

All the best,
Cindy

Thank you Cindy. I'm supposed to see Dr Harrison. I thought I heard of IMRT or TOMO being used in addition too, Brachytherapy. I had IMRT already, so I'll see what the doctor says. I heard fom another RO that he is an expert in H&N cancer. I'll let you know tomorrow how it goes.

Hi Cindy.

I met with Dr. Harrison on Monday thinking about the Brachytheraoy. He is brilliant man. Met with one of the assistants first, gave my huge him volume of paperwork, and finally met with Dr. Harrison. You can tell he is an intellect, and thought deep when speaking. Dr Harrison immedistely said I have a comsituated there is only one thing, and one thing only that can be done, and done safely! He would explain it to me first, and then it would be for me to decide, and was unprepared what he said.

It's a four part process. 1. Do surgery again, clean up any reaming cancer. 2. While the neck is open, do external beam radistion 3. Do a flap with a chest muscle to have fresh tissue on the neck 4. Once healed, do Reirridation, and maybe Eributuc, on the fresh tissue.

As discussed, Reirridation without this is too risky for the carotid artery, and the dosage wanted to be done elsewhere at 50Gy will not be enough.

This is called Intra-Operative Radiation Therapy (IORT) and only done in a few places. Dr. Harrison is a pioneer with this, invented some devises being used, and an expert in this, having done many studies at Beth Usrael and while at MSK.

He also chided me having a network of doctors all overvthecfity, and said I need a multidisciplinary team with everything done at one place, not all over.

I like Dr. Harrisin and have confidence in him. I met with Dr Jacobson yesterday, ENT, who doesctjiscsurgety with Dr, Harrison. I plan on doing this, and lookng into Mid August for surgery.

Thanks for all your help!

Awesome!

Thanks Cheyrl. I go gor a CT scan on Monday. Surgery is scheduled for 8/20/22.

Fingers crossed this is the end of it!

Keep us posted - fingers, toes, eyes crossed that you have now found the perfect plan for you. Hugs

Donna

Than you Donna.

Hi Paul:

I am sorry to hear you have a tough surgery ahead of you, but I am happy to hear you have an option and are having a positive experience with Dr. Harrison. I, too had Dr. Jacobson with whom I also felt very confident. I agree that Dr. Harrison is a brilliant man. I had Dr. Berlach, wondering if that is the assistant you had. I was comfortable with him also. I hope the best for you.

I was blown away by the procedure you describe. I remember feeling like I was in some science fiction movie with my procedure. My Mother always says, "you gotta do what you gotta do".

I am sorry I have not been able to actively be back on the forum. We almost lost my Father 3x since July 11. He pulled through amazingly and is now in a skilled facility with a road ahead of him, but will be able to be going home after rehabilitation.

Please keep me posted on your progress. My prayers and positive thoughts are with you.

I'm sorry to hear abou your father, and glad he pulled through. Thanks if getting back to me, and appreciat your support, and giving the name of Dr, Harrison, otherwise, I may have went elsewhere.

I called Memorial Sloan Kettering, who I contacted before Beth Israel, and after submitting just about every single document, scan, and slide just to get an appointmrnt or a consultation, basically said, dont even bother to cone in for a consultation. I was dumb founded, , but glad I did not wait solely on them. They asked, and agreed, for them to send back my documents, which cost $400 to obtain, transmit.

Although not happy, MSK, does hsve an integrative Health center offering a variety of adjunct, alternative treatments like Reiki, aroma therapy, massage. You don't have to be a patient there, so I'll inquire tomorrow.

I had Reiki during my treatments when I was at University of Penn Hospital for outpatient radiation and Chemo prior to the brachytherapy at Beth Israel. They offered Reiki in Philly. It seems like more and more places are offering those types of alternative treatments. I liked it and it made me sleep really well at night.

Maybe they have something at Beth Israel. I was there for 8 days and since I was in isolation I never inquired.

I'm glad you found Dr. Harrison. You have another option now that you didn't have before and will know you have done everything available. My dear friend Dawn pushed me to go see Dr. Harrison and I feel I owe her my life for prodding me to see him even though the Philly doctors said they didn't think he would.

Hi Paul, I am also new to this... We can learn together I've had recurrence n it sucks... To me it's worst when they tell you the cancer is back than when they first diagnose you... Anyway, I've learned that us cancer patients need to keep a positive attitude and believe you will be ok... Have faith.. I will be praying for you...

Thanks Cindy. Find out the integrative treatment cost money lol. I'm not paying. Beth Israel has some integrative medicine, and will look into it, but will be out of commission after surgery also. I didn't know you were there that long? I was told for my surgery 3 days, but read in an abstract done there it range from 3-15 days. I saw Dt. Harrison, and gave me more confidence.

Thank you Edmar.

Paul

Wise choice on bypassing the "quackademic" options like Reiki.
It's sad when people think just because a hospital offers them they are valid. While marketing executives put a happy face on it, the truth is that are considered "efficacious" if the patient likes them. As the AMA noted the discrepancy in what they say and what's really the reason: People like it and some will even pay full price for these even if no insurance company will ever.
[quote]Though 70% of executives at hospitals providing unconventional therapies said they are doing so because they are clinically effective, only 42% said they use patients' health outcomes to gauge the success of the alternative medicine programs. Instead, they are principally using patient satisfaction and volume as evaluation metrics, the report said. The programs were most often started by hospital administrators, with physicians championing the idea 20% of the time.

The alternative therapies are intended to supplement conventional medical interventions, Ananth said.

"Many of these services are low-risk," she said. "Patients are looking for the best of what both conventional and complementary therapies can offer, and hospitals are responding by offering these choices."

Patients usually pay for these services out of pocket, although hospitals offer them free 44% of the time, the report said. They usually are not covered by third-party payers[/quote]
[quote]One in five alternative-friendly hospitals provides Reiki, which the National Institutes of Health's National Center for Complementary and Alternative Medicine describes as a Japanese therapy in which "practitioners place their hands lightly on or just above the person receiving treatment, with the goal of facilitating the person's own healing response." A systematic review of nine randomized controlled trials, which was published in the June 2008 International Journal of Clinical Practice, said, "The evidence is insufficient to suggest that Reiki is an effective treatment for any condition" [/quote]
Demand drives more hospitals to offer alternative therapies
Of course Quackwatch tells it candidly
Reiki Is Nonsense
As an old hippie, I have many old friends who became Reiki masters (just like Dr. Oz's wife) - it's all woo woo.
Charm

Thanks Charm. I'll try anything for free as complimentary treatment lol, but im not paying for it. Although, accupuncture was very effective for my sciatica 15 years ago, when nothing else worked.

Actually reiki is valuable even if it does nothing more for you than relax you and ease your mind.

Everyone acknowledges that any placebo is helpful to those who believe in it. But that does not make sugar pills "valuable".
I try my best to keep the OCF forum free of fake therapies and woo woo medicine like Reiki which is just a secular form of "faith healing"
Its important to speak the truth about these bogus "treatments' so that the forum members are not mislead especially when there are methods like Yoga or exercise that are clinically proven to work on even the most skeptical unlike placebos.
Charm

I'm sorry you feel so strongly against some of the alternate therapies. There is no risk to trying them and each person has their own outcomes whether it be physically, mentally or emotionally.

I had Reiki the last time I went through radiation and it helped me with relaxation and my sleep was wonderful. I always felt well rested those nights and I always woke up hungry the next morning.

Not everything is helpful to everyone, but I believe it is helpful to have an open mind.

You refer to "faith healing". In my opinion, when is it not a good idea to have a little faith?

Just my opinion....

As a side note, Acupuncture was the only thing that got my migraines under control when I was in my thirties.

Cindy

You are entitled to your own opinions, but not your own facts
The facts are that Reiki is a scam and false alternative to TX.
Faith is a very good thing, except when it's misplaced like Reiki proponents. There are plenty of cancer internet sites where "wide open minds" can extol Reiki, mexican clinics, german cures, crazy diets, whatever. I don't want to see OCF devolve into such an unreliable source of information.
I will concede that there is no risk to Reiki except to your financial well being and sense of logic or knowledge of physics.
Charm

sorry, bringing about fond memories and making me laugh Charm.


Cindy, on the OCF forums we pride ourselves on science based information and what can or can't be measured in scientific double blind studies. As you can imagine there are so many people that find these forums and try to sell patients on alternative treatments or scams. Charm is our diligent watchman and has a tendency to call things as research sees them really.

I will agree with you in that patients should do things that they find relaxes them and helps put their minds at ease, as these things lower the bodies cortisol levels, which is vital during and after treatment for far too many reasons to list here.

I was under the impression from the prior posts that we were originally referring to these treatments only as a complimentary treatment in addition to medical treatment. Not a replacement for it.

My hospital never touted them as a replacement, just an added relaxation option for the patient's well being.

Cindy

Obviously you are a true believer for whom this type of placebo works. That's great. Good for you.
Thanks for not linking directly to the crazy Reiki sites.
Since it's the hospital marketing executives who are really to blame here for catering to non scientific, documented ineffective but comforting techniques, I'm going to let Reiki drop. But a real massage, where someone actually touches you has been shown to really work, even for hard core skeptics like myself. Techniques that require the patient to believe in order to work are becoming increasingly popular.
No amount of science or proof is going to sway you and you have been very pleasant in your postings so not much point in continuing to try, especially since my primary concern, that Josh would waste his money has been satisfied
Charm

Actually no one knows for sure, what works and what doesn't (even in standard medicine - if we did there would be a 100% cure rate and this whole conversation would be moot) - I personally would balk at anyone suggesting dropping a medical treatment to replace it with something alternative, but something like reiki, and even theta is therapeudic as a complimentary treatment - and it's noninvasive and harmless (except to your wallet). In this vein of thinking I say do. what you can. As a point in fact I believe me Anderson offers reiki. Why? Unless it has some value.. Even if it's merely psychological.

Acupuncture is in a class by iteself and is a valid complimenatry treatment. it helped immensely post treatment for me and Asian medicine uses it integratively in hospitals as a form of pain control, (when I was in nursing school they actually showed a video of a Chinese woman going into the OR for a hysterectomy, she walked into the room they used a few acupuncture needles she was conscious through the entire surgery and she walked out of the OR - apparently where they placed the needles deadens the nerves for up to 24 hours - or something - less pain, less stress on the body, better faster healing),.I would be careful using it during treatments as it does open you up to infection, (anything that pierces the skin does - sterile or not) but after it is great... Much like massage.

Anything that requires suppliments other than protein I would check out with your drs first - just in case there are problems with interactions - but integrative alternative medicine is becoming very popular In a lot of the well known - and top CCCs.

Hugs.

I had my surgery on Monday, August 20th. Everything went well, 5 hr surgery..neck dissection, EBRT, Pectoral flap. Went home Thursday when drainage tubes were taken out. Dr believes they took out cancer along the surgery line, some may still be there, and waiting for pathology. Next step is radiation and chemo.

Glad to see you post, Paul. Best wishes for a speedy painfree recovery!

Hopefully they got it all!! hugs - heal well!

My sister in law could barely climb on the massage table when the rock healer arrived with his bag of stones. She was one of the most intelligent people I ever met but in her final week of a 4 year battle she was grasping for anything. The idiot (and man he was) that worked with her was an insult to tragedy, "I'll have you outside kicking a football with your son next week."

That said, Reiki is very relaxing, as is massage, meditation, visits from friends, ACTIVITY. Cheryl made a point about "what works" and our ultra conservative onc is the first to say that activity is critical.

Anyone knowing my Dad knows he's not alive and doing pretty damn well today due to treatment alone. Oh, and that whacky Miss Cindy? She's ahead of the curve re the right treatments and places to get them--hopefully taking me to a Reiki bar for happy hour after that appointment with Dr. Charming? ;o)