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I jut registered personalisedtranslationaloncology.com

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

you may ask , what personalised transaltion oncology ?

see answer below, i added the work personalised to focus on the individual genetic and personalised clinical focus we all deserve as cancer patients. 

Clinical and Translational Oncology is an international journal devoted to fostering interaction between experimental and clinical oncology. It covers all aspects of research on cancer, from the more basic discoveries dealing with both cell and molecular biology of tumor cells, to the most advanced clinical assays of Conventional and new drugs. In addition, the journal has a strong commitment to Facilitating the transfer of knowledge from the basic laboratory to the clinical practice, with the publication of educational series devoted to closing the gap between molecular and clinical oncologists. Molecular biology of Tumours, identification of biomarkers for cancer diagnosis, prognosis or prediction of treatment response, identification of new targets for cancer therapy, as well as development of new technologies for research and treatment of cancer are the major themes covered by both the educational series and research articles. A broad spectrum of subjects, including the molecular and cellular bases of disease, aetiology, pathophysiology, pathology, epidemiology, clinical features, and the diagnosis, prognosis and treatment of cancer, wants to be Considered for publication.

I expect the site to focus on a few detailed case studies showing the results of the intelligent combination of surgery, chemotherapy, immunotherapy and functional and integrative medicine. just because i dont post much here, does not mean i am not trying to find a durable robust set of therapies with curative potential for stage 4 who are deemed inoperable.

I have dropped basically my research into supplements and diets and am leaving that to a few good friends, i am focused on tuning and tweaking my immune system and finding the reason why recurrence 2 occured in the presence of dendtretic vaccinne 4 ? we already suspect we know why it failed, its not the science but the clincial management. 

if anyone wants to help me run a professional website dedicated to the above, pm me. my web presentation skills leave alot to be desired.

 

http://www.cancerstrategiesjournal.com/SampleArticleWinter2013.pdf this oncologist just might be the best onc in the states, i like what he says. it sounds so familiar to what i have been saying for 2 and half years. maybe some of you will like the way he says it. well worth a read.

Lovekitties's picture
Lovekitties
Posts: 2934
Joined: Jan 2010

You wrote:  "we already suspect we know why it failed, its not the science but the clincial management. " as the reason for recurrance.

Who is "we" and what exactly is "the clinical management"?

Do I understand correctly that you are starting your own web site?  Will you just be the moderator of the site?  Will you be inviting those involved in the subjects mentioned to post their philosophies, experiences and results or will it be open to all to just post their info?

Any additional details about it would be appreciated.

Marie who loves kitties

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

it prime prupose is to document the patients who are following in my footsteps in a sufficiently professional way to engage interested clinicians and researchers. to show them the efforts we the paitent community are making. that we ourselves are testing the latest therapies on ourselves in an effort to survive. te latest of the lateat science.

the patients who i am helping are willing to document there experiences and results, i ted and quiet a few others not from CSN but whohave colorectal. 

the researchers want to see what happens in humans trying the latest antibodies.

maybe even conventional oncologists will look at it in awe and say these therapy combinations are clever and effective. 

basically terminally diagnosesd patients are not the cannn fodder of big pharma, we deserve the best and most innovative clinical management with the latest potential therapies.

the internet will allow these experiences to be shared, how public will depend, i suspect it will be prefered to keep some information confidenial and some public, I am aware of the scientists need for confidentiality despite there curiosity. I am to bring a bunch of willing patients to the rms of the medical communnity.

mot thee the immunotherapists and research scientists the not heard of removab or vogel and his techniques. now 600 scientists and doctors the worlds best know about my response, but they cannot explain it in detail. its success and recent failure specifically that is, but we have some details.

i mainly just wanted to share here the details of this journal, to bring to the patient communities awareness of this journal and the efforts of its supporters to ultimately promote science that is saving our life day by day.

maybe out of it will come a new style of clinical trial where stage 1 trials will have n=1

i guess i am changing audiences , or expanding audiences rather, given i cannot get answers from within the patient community i am go to the medical research community and immunotherapists. its exciting times we live in.

many of the ways i have mixed and matched these world leadingg therapies caught the attention of many doctors and scientists. so basically i want to engage with them, get their ideas for the few friends i have who are doing these therapies in germany.

i may be lucky enough to find a post doc willing to document these cases, in a best case style series of cases. our results will be interesting. the results will be compared retrospecively against patients treated with the standard of care.

only invited will sharing case histories, my goal is to have the best case hopefully mine documented in the cancer research journal, americas leading journal, i met the editor at this conference. it might easier for ptieents to demand therapies similar to mine, if its documented in a leading journal. if we have a few patients over 12 months published that would be enough.

of course i am torn between m survival efforts and these ideas, alas i am aware of my many limitations and strong points and need some help, but its a good idea , at least i figured i should register the domain name and spend 10euro and publish the beginning of what i think is a fantastic and innovative concept.

 

namely bridging super survivor patients experiences doing the latest intelligent combination of therapies, maybe we can higlight the rational of leaving the gold standard behind, the rational, the science and then the clincial benefit.

ie an inoperable friend a 40 something mother colorectal with late stage 4 inoperable, with divericulitis had a full personalised assessment, she has had 2 chemo embolisations with selectively targeted chemo agents, and one systemic chemo. this is 10 weeks post chemo, she has had a 30% reduction tumour volume and is now searching back home to have tumour removed, initially no surgoens would touch her, now we have german surgeons willing to operate, but due to funding she is renewing the search back home, with greatly improved chances of having this operation in her own medical system and can be close to her family.

she is also planning post operative chemo on residual disease and then transitioning to antibody therapies, then vaccine therapies. they are selling the house, they came within 3 days of talking to me and seeing my story. she is so far ahead of where she would have been after 6 months of peroperaive folfox which is what conventional doctors offered. diviticulists is contraindicated for chemo, peritoneal infection. getting truy personailised and effective medica care saves lives.

hoping highlighting the clinical benefits of these therapies beyond myself, will kick start the immunotherpy revolution. i have to go and get my infusions, i am back in the thick of therapies for this week, seeing the best way to solve cea=23.

did you read america best oncologists journal, i would be sincerely interested in anyones comments, i am trying to reach patients using these therapies or at least interested. i am also keen to leave alone in peace most patients doing the standard of care. what is truly amazing marie, is patients wanting what i want, those risk takers find me, the internet is fantastic. given i have the same 24 hours a day as everyone else here, and that each day is precious given our few challenging cells. i am still not here posting about useful CAM, i note with some saisfaction and relief that CAM is a much more accepted discussion topic here, on colonclub and colonchat.

I wish us all the best health, i am praying for us all, everyday and pray that we find a way that the benefical set of therapies I have used is made available to broader patient communities.

hugs,

pete

ps if you or anyone likes this material read his blog. 

pps one day we will wake up and the entire medical landscape will have changed. that day is coming soon my friends, when that day arrives we can all have more hope, alas to access that hope you will have to do more.

 http://www.dwightmckee.com/

Lovekitties's picture
Lovekitties
Posts: 2934
Joined: Jan 2010

If I understand correctly, you are asking patients who are following alternative therapies to post their journey with the hope that clinicians and researchers will read them and be inspired to do more.

Will you only allow patients who have success stories to post or will you put out the failures as well?

I don't disagree that we need something new and improved to not only cure those who have cancer, but also prevent it.

In order for a new treatment or theory to capture the scientific community, results will be key.  Given the nature of cancer, the human body and environmental impacts since a person's birth there are an infinate number of vairables.  While your personal story is interesting, it would be impossible to replicate all that you have done, even if you were pronounced cured.

While I wish every person with cancer success in whatever their chosen treatment is, I would prefer all research dollars to go towards prevention.  If we can stop it before it ever starts, we will have created the miracle which will benifit mankind forever.  And who knows, perhaps with those findings we can also help those who already have the disease.

I wish you well Pete, but don't be surprised if you don't get the immedicate gratification of acceptance you are seeking.

Marie who loves kitties

 

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

hi marie,

i would not say alternative, i would say non conventional therapies so that includes departures from the gold standard where clinically indicated using immunotherapies, surgery, chemotherapy ( intelligent chemo based on molecular profiling ).

i just have the domain name setup, and the concept, my friends over here are just going to blog like I hae, document on a contemporaneuos basis the results of these therapies. as long as we keep these therapies documented, the case studies can be presented later.

replicating what I have done is illustrative of the concept of personalised translation oncology, but everyones treatment will be different as was Ren, as was Ted, as was mine, and many others. the differences between us and our illness the key factor in the personalised approach. how well it works can be assessed on a case by case basis.

I want to present cases that have clinical and scientific benefit. Potentially the site will just be a series of blog entries where anyone can comment. its an evolving. The fact I had the idea and then found a jounal that covers that subject area is interesting. I presume thats one place I or a uni affiliated researcher could publish the interesting case studies. what gets published is up to the journals editors, not me.

I have lived long enough without thanks and gratification, I am intrinsically rewarded. I am satisfied to see the many CAM style posts here on CSN, when before they were torn to pieces.

As I have active metastatic illness I prefer them to continue reseach into a cure, alas CRC is low on the drug company funding list because our standard of care delives reasonable results in comparison to gbm, lung, melanoma etc. they are the money making targets of big pharma to my understanding. the area of largest unmet need, the most profit. our salvation in the colorectal wold will have to come from within.

thanks for the kind wishes.

Pete

renw's picture
renw
Posts: 282
Joined: Jan 2013

Certainly a long reply, but it did not answer the question. Ever considered a career as a politician? :)

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

but yes, in my dreams, if i am a few years in remission, not a few months yes, it crossed my mind. alas i would have not learn grammar and how to spell. to be honest i would rather dream of winning a nobel prize for medicine, thats achievable, politex is to hard.

the we, is my doctors, my researchers and me. you know kopic and nesslehut. nesslehut i think will confirm the recurrence is likely due to my spike in il10 stimulating treg and mdsc. this is just my guess. have a quick read of dwihts journal, its excellent. i have subscribed, hint , hint.

 

John23
Posts: 1832
Joined: Jan 2007

 

Ya’know, Pete… There’s a lot of people that would be more impressed with your great success with these very expensive cancer remedies, if the time period of your remission was more than a few months.

 

So, so many find “NED” as only a temporary, fleeting moment in time. It’s when that period of no recurrence lasts for 3, 4, 5, or more years, do we respect and pay attention to what may have caused such a phenomena.

 

I think most cancer patients don’t really take a few months of NED as proof of any kind, that something wonderful has been discovered that will change all our outcome with this dreaded malady.

 

It’s been since 2006 for me, Pete. And still, no-one takes TCM or Chinese/Asian herbal remedies seriously. Perhaps it’s the $5~6 per pound, or the meager pittance of under $100 per month for the herbs that causes the lack of interest? After all, if one spends a fortune for success against cancer, how can anything inexpensive work better?

 

I hope your remission lasts 100 years, Pete. You deserve a break..

 

Best wishes,

 

John

 

LivinginNH's picture
LivinginNH
Posts: 1293
Joined: Apr 2010

Pete, I've been reading all if your recent posts, but I always come away with the question:  If your CEA is at 23, you're no longer in remission, so why would you think that after only a few months of stability that your story would be highlighted in a medical journal?   After all, Craig has been clear for a year now, and he did standard chemo along with surgery.  So basically, your claims of a medical miracle are a but puzzling to me.  

Take care, and I do hope that you can get your CEA count down again.

Chelsea71
Posts: 1170
Joined: Sep 2012

Actually, I think I remember Craig saying he has been clear for almost three years.

Sundanceh's picture
Sundanceh
Posts: 4283
Joined: Jun 2009

24 months in June!

9 years out of dx in June too!

We'll finally talk about it in a couple of weeks when I officially roll over...

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

All but for a few weeks over the last 8 months, i have enjoyed improving health and had a good quality of life.

my short remission just highlighted the potential of immunotherapies to wipe out all detectable tumours.

so cea 81 down to 2.9 , detectable mets liver, peritoneum and lung all vanished from the scan. 

so a none chemo based remission, I am the first one I have seen that was documented with extensive colorectal, now I have heard of others.

craig had surgery. I still have surgery as an option, I am seeing prof morris my hipec surgeon when i get back to australia, to discuss strategy, until we know where the growth is the systemic immune system based therapies that worked before are being used again.

effectively i had intensive immune theraies, depleted my immune system. ultimately surgery may be an option for me, the key import in my assessment is assessing tumour burden.

I cannot understand how you cannot see how magnificent my success is, or john. the immunotherapies have been proved at least for me. what my latest recurrence shows is they need better clinical maangement. i have a few tests that 6 weeks indicated tumour progression when cea 2.9, but we beleived cea not nagalase, not tktl1. I also have a few other worthwhile diagnostic tests that could have offered guidance with therapies.

6 weeks ago , i was given a very mild non primed dendtritic vaccine, instead of the gamma delta cell therapy, the most aggressive form of immunotherapy I have access to at this point. i am doing that 18 june. when i go home i am doing 3 rounds avastin and likely 500mg breaky, 500 mg dinner xeloda, and every few days higher dose insulin potentiated metonomic chemo. the lowest dose for the biggest bang.

the future is intelligently mixing and matching these therapies based on clinical need and the conses of my doctors. its an exciting project, and for me its more interesting than the football.

i may very well follow in craigs path, but can you see the potential of these therapies is to string uot our survival. to not use up the finite number of chemo doses that are effective. to hit our tumours from as many chemical, natural and lifestyle options.

for the record, i stopped most of my life style interventions in the last 6 weeks when my family visited, my cea rose from 6 to 23. some would call that a coincidence, i dont believe in coincidences like that. life style more than ever is an essential piece of the puzzle.

thanks for the kind wishes about my cea.

craig used what he had access to and did eally well, just like I am. Its never been mine is better than yours, but that you try mine first, or at the right time. so yes its say do three rounds of folfox post resection, say to the point of minimal detectable disease and than puish your immune system as hard as you have ever pushed it, that means targeted and systemic immunotherapies. thats the only clinical path I know that uses the least toxic, potential most effective therapies.

you get the best quality and quantity of life possible, even if you dont get cure, you dont have chemo side effects.

none of the doctors at my latesst conference had a patient have all his detectable tumours disappear in 12 weeks of combined tace and immunotherapies. thats why its the best cancer stories this century. thats why every person I takled to at the conference gave me there card and said say in touch and they wished me goodluck. I wished them goodluck and thanked them for there work trying to save us.

i knew i was not as delusional , as some here claimed, when the editor of one of cancer|s most pretigious journal gave me his card and said he will link to my blog from his new website immunochemo.com and chemoimmun.com . this editor gave the closing speech to the conference about the marriage of immunotherapy and chemo. 

cythia, just wait for the announcements at asco, almost every word I have been saying will be supported, at the principles and strategies. I am satisfied that now I actually have usa based oncoplogists advocating the same integratie strategies i can relax on that front.

please read dwight mckee first journal, if you are not convinced, he explains in a concise and simple manner many of the life style interventions that are essential to our survival.

hugs,

Pete

ps a complete remission from stage 4 with no systemic chemo, no surgery just immunotherapies, that the best story in the world in my opinion. these therapies work for so many others coming to this clinic. the tragedy the therapies are not available elsewhere, the reason business and clinical management issues.

 

tanstaafl's picture
tanstaafl
Posts: 960
Joined: Oct 2010

are the "...website immunochemo.com and chemoimmun.com" addresses written correctly?  (Not yet started?)

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

the journal editor jsut registered the domains because this combinational therapy is going to be everything in the next few years, no trials just hope.

i just mentioned them to illustrate the concept that a top editor is into the marriage of chemo and immunatherapy.

these therapies work, trust me and I am not a doctor. i have met the survivors using these combo therapies.

like phil said below many options for us all. I will try them all if i have to, plenty left on the list. what counts is we have options.

hugs,

Pete

ps can you email me all the cimetidine research , please, i have a dear friend two weeks out from surgery and see needs to convince her surgeon about it. she is loosing colon and historecomy. massive tumour 30% reduction in 4 weeks using combo tace and chemo, quick massive reduction and off to surgery. she is one of my case studies. she was inoperable 10 weeks ago, now she is shopping for surgeons, she was offered six months preop chemo, personalised tagetted preop therapies shaved off 5 months of systemic chemo, the resulting immune loss of function. she is a wonderful mum. thanks tans.

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annalexandria
Posts: 2204
Joined: Oct 2011

just based on the usual tx.  I don't need a whole journal to myself, but how about a pic on the front cover?  Can I wear my tiara?  AA

ETA that a remission of a couple of months is better than the alternative, but just not all that exciting.  Most of us stage 4ers have experienced such remissions before, only to see the cancer come back in time.  That may be why we are not acknowledging your efforts in the way you seem to require, Pete.

Plus, the nature of your story, for those of us really have been trying to follow you (with the best of intentions), is just too confusing.  Just in this one post here you said "no chemo", and then switched to no "systemic chemo" (I believe that is the more accurate assessement, right?).  It's very hard to understand what you're talking about.

And if you really did present yourself as a doctor or researcher at that conference you went to, as you said on your blog, I would urge you to think very hard about what you are doing, Pete.  We don't want to see you get yourself in trouble.

AA

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

I hope you stay ned for many more as well and yuo can where your tiara.

my remission even short was wonderful and exciting. for those who choose not to have systemic chemo, for those who are inoperable the set of therapies I have used are a valid choice to be considered.

personalised medicine is complex, i relay the key points of my treatment as well as I can.

As to getting into trouble as to how I present myself, you see ann, they will not allow patients into some medical conferences. for whatever reason doctors want to maintain exclusivity of the information about our illness and treatment options. So the doctor description, was I considered I have done enough research to quality for a PHD in cancer treatment and research. I have been to more than enough seminar and conferences to more than hold my own with most doctors I meet, and often an informed patient has an insight into their illness that doctors simply cannot have. As my treatments in Germany span 5 clinics, I have picked up opinions and perspectives from the many doctors who have provided opinions. So I class myself as a naturopathic doctor, but with no formal training, I am treating myself. I now consider myself as a scientific researcher and today signed up for my first medical journal.

I have been getting into trouble my entire life, a little extra now is no issue. I associate life with trouble or challenges, so the more challenges the better, well then I know I am alive.

hugs,

Pete

ps I told this one researcher a few days ago 

Two and half years ago I was a colorectal patient, then I became a doctor, at this conference I decided to become a scientist. First and foremost I said I am a patient trying to find a way to stay alive and document and prove what I believe is a revolutionary set of therapies. I was made to feel very welcome, was invited back next year and tried to contribute where I could.

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pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

when I am clear and back home, the first person I will vist is my TCM doctor. The issue I have with TCM and many of the naturals I used, is they dont work fast enough, in the presence of active disease, if you have improvement great, if not dump tcm, dump naturals, dont allow disease progression, the tumours growth depresses your immune system. i love tcm, i am still its greatest advocate here, besides you, i wish it worked for me.

hugs,

Pete

mags uk
Posts: 9
Joined: Mar 2013

Pete,

A quiet reader here but feel as though I have a grasp on the issues here as I have followed this for some time.

It is great that any patient achieves control over a stage 4 condition for whatever period of time, any inferrence otherwise raises issues of taste. Having watched too many people not be able to catch a break with this condition to take any form of stability lightly and to use it to settle old scores is questionable. 

If you can achieve treating this disease as a chronic condition then I for one think that is fantastic. 

Regards

Mags

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

a kind supportive comment, sincerely appeciated. I learned about the need for translational oncology at the cimt.eu conference, the scientists could benefit enormously from our experiences in my opinion. if i am wrong well, i have documented say 4 or 5 cases for no purpose. if i am correct an I would not be wasting my time, well these case studies may allow and facilitate the interaction between clinical doctors and researchers exploring very detailed and complex areas of immunotherapy, on real life human examples. NOT RATS, CATS and MONKEYs. Its time for the science to move into the body.

we have to understand and explore our magnificently complex biology. as patients we can help share the results of our struggle to survive so that researchers can assess whats happening with our immune system. as in my case my tumour changed, or the immune system changed, going over all the tests retrospectively to find answers and explanations. may provide clueues for me and others as what to watch out for and how to tackle recurrence 2.

that my dream, it may help me live as well.

thanks,

Pete

PhillieG's picture
PhillieG
Posts: 4667
Joined: May 2005

Hmmm...Here we are, again. We have members who tried various treatments and achieved similar  (but not exact) results. John's had no recurrences since having surgery to remove his cancer and then went on TCM. Ann and others (I don't mean to single you out Ann but you've been asking for it Laughing ) had surgery, then chemo with no recurrence. Pete, you're in a class by yourself! I mean that in a nice way but you've done multiple therapies and are achieving positive results. I think that tenacity certainly helped! I've been living with cancer for over 9 years after having surgery, then doing chemo, then doing chemo-lite. I had radiation a month ago and may have gotten rid of the remaining spot of cancer. I won't declare myself NED, if things go well I'll be CIDSTHACIMATT (currently I don't seem to have any cancer inside me at this time).

My CEA never rose above 8.4 yet when I was DX my first Onc gave me no chance and no hope for survival. I don't know why I am still here other than some people do better than others. As it's been pointed out before, even if a person only had surgery, a percentage of them would survive regardless of what they did post-op.

So have Ann, John, you Pete, myself, and others just been lucky? Maybe...maybe not.

Two weeks ago I met with my Onc to discuss what's next. That day I asked about a woman who I'd see there on a regular basis but hadn't seen in about 2 months. The last time I saw her she had taken a turn for the worse after responding very well to treatment. I asked someone if they knew what happened to so-and-so. I found out that she passed away about a month ago. Why?

The same day I met a guy from Florida who's been under the care of the same Onc as I have. He was dx'd 10 years ago and has been totally clear for over 4 years. He did surgery, chemo, and HAI pump therapy (similar to what I've done). Why?

I've met people who are over 10 years out and over 5 years NED. I've also known 3 people from Sloan die since Christmas. My Onc often refers to me as one of her top successful unusual cases since I've lived a very manageable life while undergoing treatment. Is my survival, when given the usual "6 months or less to live" speech spectacular and unique? I don't know...It is what it is. I'm very happy with my results and seriously doubt I'd do anything differently even if that was possible.

I just find that cancer is as unique as we are and that no one really knows if what they did is why they're still here. We all may believe that is why, but like many things of this complexity no one knows with 100% certainty...
I do wish everyone continued success and I also hope that this discussion shows others that there are many ways of approaching treatment but NONE come with any guarantee. THAT I'm 100% certain of.

Laughing -phil

John23
Posts: 1832
Joined: Jan 2007

Well said.

 

Be well; stay well,

John

renw's picture
renw
Posts: 282
Joined: Jan 2013

If you are an active csn member for more than 3 years, then you are a rarity. If more than 5 years, then you are unique.

As to why, well I think its a combiation of the specific mutation and the ability of your immue system to deal with it. Choice of treatments probably have something to do with it as well, but ultimatelly remission or no, most likely comes down to your immune system.

PhillieG's picture
PhillieG
Posts: 4667
Joined: May 2005

,,,and joined CSN in May, 2005. I won't even ask what that makes me. I don't want to leave the party, I'm the guest that won't leave!Wink 

Do you remember The Juice Chicks Ren? 2Bhealed and Scouty. One was stage III and the other stage IV. The both had surgery but afterwards made pretty major dietary changes and have been clear for many years. Believe it or not, this forum wasn't so Alternative Therapy Friendly. Yes, hard to imagine...

They were on the forum for many years and had great success with their path. Like the current CAM/ALT/TCM vs TWM (Traditional Western Medicine) "discussion", the topic wasn't always well received. They are both doing great. NED for many years!

There are very many people who beat this then leave the forum. They pop in here and there but over the years I've seen a lot of folks who do not want to be reminded of their battle with cancer. They leave and don't look back. 

It's yet another personal choice.

Then there are those who don't do as well. Go figure...

It's a hell of a complex disease.

Annabelle41415's picture
Annabelle41415
Posts: 4243
Joined: Feb 2009

Thanks for keeping us grounded in a lot of things that have been on the board.  You always have good advice and life experiences that we can all benefit from.  Love all your pictures too.  Pete thank you for all your research that you have done, you have gone to great lenghts to document all that you have done.  Wishing only the best for you.

Kim

Phil64's picture
Phil64
Posts: 435
Joined: Apr 2012

Thanks for a great post on this topic. 

 

Another Phil says "Here, here!"

 

:-)

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

 

Alternative Therapy Friendly. Yes, hard to imagine...  

I used to long for the good old days, now I am just happy for today, after all thats all we got.......................

 

our disease is as complex as our personalities, we are so different look at our faces, to think our cells somehow all respond the same way is just to simple.

I have my pet scan another 9 hours, I better get to sleep. it will be what it will. whatever it is, we got plenty of tricks up our sleeves.

hugs,

Pete

janie1
Posts: 753
Joined: Apr 2011

Mags UK  -  thank you for your most thoughtful (intelligent ) reply......I'm referring to...."to take any form of stability lightly and to use it to settle old scores is questionable".

Thank you so much for that.  I guess I am hypersensitive, but when I see people FIGHTING FOR THEIR LIVES get treated with ANY amount of disrespect, it makes me furious.

You really "get it".....so thank you, thank you.  I, too, now just read, because I am interested in research, and there are a few who are really good at it.  I am glad they still take their time

to post here (they surely wouldn't have to), because if they can help just ONE person, then that is indeed heroic, in my book, at least.  Helping people with side effects is wonderful, but 

helping even one person extend their life, to where there may be a cure someday.....well, again, i can only come up with "Hero". 

 

Pete - good luck on the scan.  But you are right, there are still things to do, if needed.

 

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

Pete,

Good luck with the new website!

 

*hugs*

Gail

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