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Second Opinion Confirms Things - It Is Back & Inoperable - Not Happy :(

NewHere's picture
NewHere
Posts: 1117
Joined: Feb 2015

Got a second opinion and it confirms what I was told.  Inoperable and it is just a question of when I go back on chemo and see how long it lasts.  The second opinon actually said start chemo now, though waiting to see when it spreads or I become symptomatic is also an approach to follow.  I think I am going to stick with that approach to see how long I can stretch things out.

I am using traditional chinese medicine, accupressure and accupunture, along with supplements of Vitamin D, C etc. to see if any of that helps hold things off.  Scan next month to see how it goes.  I will not turn down chemo when the time comes, but since there is no downside in pursuing the alternatives right now, might as well go for it.  

Looking at trials now based on my KRAS mutation (30-50% have this) and cetuximab/ERBITUX and panitumumab/Vectibix won't work.  Also have MMR-Proficient which messes with immunotherapy targeting death receptors (80-85% of CRC are MMR-Proficient )

I expected that MSK was not going to miss something, but would have been remiss in not at least trying for a second opinion.  Based on my next scans, may look for a third, but ....

The one positive is that it seems to not be aggressive and my general health should help with the chemo again when the time comes.  

Tunadog's picture
Tunadog
Posts: 233
Joined: Mar 2017

I know what you mean about wait and see.

Best of Luck 

NewHere's picture
NewHere
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Joined: Feb 2015

I will keep on keepin' on.  :)

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Do you have KRAS G12D or G12V?

If you have KRAS G12D and one of two HLA (helper Alleles), then there's a Clinical Trial at NIH in Maryland using something called TIL Therapy. The first patient that they tried it on (7 lung mets) had an amazing recovery.

NewHere's picture
NewHere
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Joined: Feb 2015

KRAS (NM_033360) exon2 p.G13D (c.38G>A) is the one I have.  One of the things i asked on the second was should I do further genetic testing (this second from Mass General), was told no and that MSK test was enough. May still ask.  Not sure about the helper Alleles.  NIH is about 3 blocks from my brother.  I was scanning this site today - http://www.clinicaltrials.gov

I know you mentioned you were tested by Mass General (Dana- Farber?) in MA.  I looked to find a testing center in NYC area or would travel to Boston.  Which test did you do?  (I have never gotten search down on this site Cool)   I can ask my PCP to arrange it.  Anything that can possibly help, I would do.

Mikenh's picture
Mikenh
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Joined: Oct 2017

Immunotherapy works by targeting structures on the cell surface and telling the Immune system to go after cells with a particular structure. KRAS mutations are inside the cell so normally the immune system would be unaware of a cell that's bad. There are helper alleles. I've read that there are hundreds but that we typically have six of these. These Helper Alleles will signal bad cells to the cell surface if they find a problem. But the Helper Alleles need to be able to detect problems. The Allele HLA-C*08:02 will signal KRAS G12D to the cell surface. The Allele HLA-A-A*11:01 is thought to present G12D and G12V to the cell surface.

So far, the trials are only for G12D and maybe G12V. It may be because G12D is the most common of the KRAS mutants. Or that it was the first match between HLAs and mutations that they ran into. I chatted with my son's manager and he told me that this area holds a lot of excitement but it would mean analyzing all of the mutations and the helper alleles to see which are useful for flagging tumor cells and then coming up with the immunotherapy for targeting the cell surface structures and that doing this would take a fair amount of time.

The story of the first person (a lady on another board) that got this treatment is at:

https://cancerriot.blogspot.ca/search?updated-max=2016-08-10T10:37:00-04:00&max-results=7

And there's a more english version of what happened.

So that's why I asked about G12D and G12V. I am not aware of anything in this space for G13D but so far they're only working on two out of a large number of mutations.

One thing on terminology: genetic testing refers to testing your genes. Genomic tumor testing refers to testing the tumor. MGH requested what remained of my biopsy from my local hospital (the first part was sent to Mayo to confirm cancer) and had it transported to MGH. They performed two assays using their Next-Gen Sequencing Platform. An RNA assay looking for fusion transcripts as a result of translocations. They looked at 50+ target genes. The second assay looks at DNA variants for 91+ genes. BTW, this is the technology that you want as it finds your mutation instead of telling you what you don't have - in the old days, you tested for things one or two at a time.

I believe that they do the complete sequence of the tumor and store it so I think that I could ask if they could tell me which HLAs are in the tumor to see if I have one of the two known HLAs that signal KRAS G12D to the cell surface. I've already had chemo, radiation and surgery so a lot of damage has already been done but it would be nice to know if I had the helpers in case I get a recurrence. It would also be nice if we could map out all of this stuff for all of the KRAS mutations to the HLAs. That way, future tests could just tell you if immunotherapy was an option. It seems to be luck of the draw right now. I've seen some of the statistics but they're on relatively small samples.

Papers that I'm looking at: Adoptive T cell therapy for cancer in the clinic; Identification of T-cell Receptors Targeting KRAS-Mutated Human Tumors; T-Cell Transfer Therapy Targeting Mutant KRAS.

If MSK uses the same tech as MGH, then they should have your entire tumor sequenced. But this other stuff wouldn't be helpful at this time because the research isn't there for G13* yet. When you said that your mutation was common - I assumed G12D which is why I asked.

There's a long discussion on the therapy, called TIL, at http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=49736

NewHere's picture
NewHere
Posts: 1117
Joined: Feb 2015

I thought I had replied (I did and I hit post) to your post Mike.  I am not sure why it did not take.  Quick takeaway - you are seriously smart and I appreciate all you wrote ...  Not sure what happened.  The title of my reply was You Are Seriously Smart Mike.  And then went from there.  Urgh.  But thank you.

Mikenh's picture
Mikenh
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Joined: Oct 2017

It's actually my son that knows this stuff. I run down papers, give them to him and then ask him to explain what they mean in simple terms. I have neither a biology nor chemistry background. I think that the future of cancer treatment is personalized medicine (that is custom for each person) but we're very early stages of this right now. I do hope that you find a solution for your recurrence and I will keep an eye out on G13D in case something pops up.

airborne72's picture
airborne72
Posts: 277
Joined: Sep 2012

That sucks, but more important is your affirmative attitude. I am impressed.

Good luck my friend.

Jim

NewHere's picture
NewHere
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Joined: Feb 2015

Got to keep on going and not let it bring me down too much.  This news was a bit more difficult to bounce back from, but to the extent I reduce stress it is good for the body.  The accupressure and accupuncture and meditation is fun.  Feel like I am pampering myself a bit.  Need to get better about completely zoning out - after the treatment, as the needles are in me, I am listening to mediatative flute music.  Need to calm my mind a bit more during that to relax.

Trubrit's picture
Trubrit
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Joined: Jan 2013

Not good news, New, I am sorry to hear it. 

I know you will feel better to have gotten the second opinion.

You know that you will now take over the batton from our friend, John; and report on how the TCM is working for you. He would be so chuffed to know that his words influenced you. 

You are a positive spirit, New, and that will help you as you face the future. We will face it with you. 

Tru

 

NewHere's picture
NewHere
Posts: 1117
Joined: Feb 2015

And you know it. Still sounds risque.  LOL 

The second opinion was worth it and I would highly recommend going to get one.  The report was nicely done and having an 8 page document and the ability to ask any questions and get answers was worth it.  One of the big ones was confirming it really is inoperable due to location and that it probably is running around everywhere at this point.  I do appreciate that they are not sending me into a h--lish surgery that would have limited benefits and would really dink me on the quality of life side.

I wish John was around, would have a couple of questions to bounce off him.  Some guidance on TCM side of things would help.  Like Western Medicine, I have run into divergent opinions from a couple of TCM pracitioners.  The one I am working with is studied in both Eastern and Western medicine and someone from Asia.  (Not sure if you recall one of the things John and I discussed about selecting someone, he believed in someone who had an inherent belief as part of traditon, the pracitoners I have met with meet that criteria.)  The person I selected has me dosing on Vitamin D and C in high amounts (nothing crazy).  Some other supplements, Selenium and Artichoke Pills, plus also herb mixtures.  It is funny, as I stir the mixture in the pot, I think of John's instructions.  It seems to be a different mixture and different rules (about 12 tablespoons a day, not drinking cups, the first TCM had me drinking a glass of mixture tea twice a day.

Will definately let everyone know how the next scan goes.  Fingers crossed that satys the same or shrinks.  That would be awesome.

ron50's picture
ron50
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Joined: Nov 2001

From our first diagnosis we all face the same situation that you are in now. Some of us luck out and some of us deal with it with commonsense and a plan . I applaud your plan and I hope it brings you a lot of quality time and peace of mind , Hugs Ron  .

 

Canadian Sandy's picture
Canadian Sandy
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Joined: Jul 2016

Sorry to here this New. As Ron says “we are all faced with this”. The strength you have will help carry you through. Your in my thoughts.

 

Lily Flower's picture
Lily Flower
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I'm sorry to hear Newhere. You seem like you have a positive outlook of life even in this dreadful disease. I admire you. Attitude plays a great part in fighting. Good luck!

Cindy225's picture
Cindy225
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New - your approach to staying positive, being present and in control about your care is inspiring.  It's all so scary and having a way to calm your mind through this journey is so important. 

Cindy 

PamRav's picture
PamRav
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your news wasn’t better.  Do pamper yourself!!!   Meditation , relaxation can bring great comfort.  Help you focus on what’s truly important and that’s the here and now.  

Yesterday is history; tomorrow is mystery...today is a gift. 

Peace

pam 

Annabelle41415's picture
Annabelle41415
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Sorry to hear of your recurrence.  Don't look at it as inoperable because if they or you decide to go back on treatment it could become so in the future.  There was a member here that did many of the treatments you did and he did very well for many years.  Wishing you the best and hoping that your team of doctors can give you some options moving forward.

Kim

darcher's picture
darcher
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  That's terrible getting news like that.  You probably want to do as the doctors say since it could become operable in the near future. 

NewHere's picture
NewHere
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Joined: Feb 2015

The issue is the location. It is in area so risky they will not even do a needle biopsy due to spine, vascular area and the rest.  There could be a technique maybe at some point.  The second opinion also confirmed that it in all likelihood has spread elsewhere, so trying to do the surgery is very high risk low reward scenario.  (i.e., Bleeding out, paralysis, infection vs taking out one spot when it is most likely elsewhere and chemo bound anyway.)   

But I am taking my vitamins, herbs and the rest.  And there is still a part of me believes that I am going to hold this at bay to avoid chemo. Maybe even have growth reduced without chemo  And there is part of me that believes even that it may not be cancer, CEA did not go up - actualy went down a tick.  I need to not get too attached to either of those thoughts, becuase when it turns out that it is cancer and spreading, that would make that time worse.

Really do not want to go back on chemo, but I can deal with that and have a life every other week.  It is that it eventually stops working that is a bummer.  So c'mon science, new treatments hurry up please Cool

OzarkGal's picture
OzarkGal
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So c'mon science, new treatments hurry up please Cool

AMEN to that!!!!!!

tanstaafl's picture
tanstaafl
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Have you considered increasing your vitamin dosage, along with daily Xeloda and celecoxib ?   A good combination should avoid side effects, reduce markers, and kill cancer cells over time by various paths.  5FU doesn't work well for us until enough ingredients are added to the mix.  Also this gives us better control of things, even able to dodge shortages for a (long) while.

We find some of the markers don't recede until truly higher (but still comfortable) doses are reached.  e.g. 50 - 90 grams of IV vitamin C is much better (one marker falls rapidly) than 30 grams (same marker rising slowly).  This approach also seems to be a potential inhibition/immune factor for D3, K2, coQ10 perhaps a number of other nutrients.  NIH authored PNAS papers say IV vitamin C levels are particularly a factor in KRAS/BRAF mutant inhibition.  

Likewise, cancer surprises suggest that you weren't adequately monitored, even if they followed NCCN standards.  Standard medicine often seems to be technically obsolete or stunted medicine.  We use CA19-9, AFP, ALP (already common data) and LDH in addition to CEA, along with MCV (it's alreading your CBC), ESR, hsCRP, HgbA1C for support work.   We would have been knocked out of the war long ago if we settled for "standard".   

NewHere's picture
NewHere
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Joined: Feb 2015

>>>>Have you considered increasing your vitamin dosage, along with daily Xeloda and celecoxib ?   A good combination should avoid side effects, reduce markers, and kill cancer cells over time by various paths.  5FU doesn't work well for us until enough ingredients are added to the mix.  Also this gives us better control of things, even able to dodge shortages for a (long) while.

 

Doing that.  Dosing Vitamins, taking herbs.  Chemo will not work forever for me when I start, that is the issue :(

 

>>>We find some of the markers don't recede until truly higher (but still comfortable) doses are reached.  e.g. 50 - 90 grams of IV vitamin C is much better (one marker falls rapidly)

 

Taking 3,000 MG Vitamin C a day, 10,000 D. Various TCM.

 

>>> Likewise, cancer surprises suggest that you weren't adequately monitored, even if they followed NCCN standards.  Standard medicine often seems to be technically obsolete or stunted medicine.  We use CA19-9, AFP, ALP (already common data) and LDH in addition to CEA, along with MCV (it's alreading your CBC), ESR, hsCRP, HgbA1C for support work.   We would have been knocked out of the war long ago if we settled for "standard".   

 

I have been going to various places looking for things and tests.  Where to go for that?  I will.  Keep on asking for more tests and genomic testing as much as possible.  

tanstaafl's picture
tanstaafl
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Joined: Oct 2010

Yes, it is difficult to find one stop answers, so  a lot of things become self responsibility, cumulative and shared info.  The adjuncts' (chemo and CAM) impact on the cancer and markers is additive  when used successfully.  The problem most people have is getting a strong enough total treatment to visibly dent their markers without damaging their bodies.  Damage is mostly on the prescription drugs and chemo sides, but in some cases, with the nonstandard stuff is possible.    Again, we've used much higher doses of several vitamins with expert advice, along with a supplemental list similar to Life Extension's list in 2010.  Higher doses in concert, this is not driven by dogma but data.

 

Most people don't get enough quality blood data to see small  improvements, or small fixable problems. Important data series are often not soon or long enough.  Lots of small improvements can add up to more than a "big treatment" (e.g Folfox/Folfiri)

 

"...tests  Where do I go for that?"

We've used either local or national phone numbers to arrange blood tests ourselves.  e.g. I've used the 800 number for Life Extension which has annual sales on blood tests in the spring, as well as a local lab.  I prefer to use one lab for consistency as much as possible.  It's easier than bending dr's fingers since they often pay more attention to insurance, Medicare, NCCN etc even if you pay cash.

NewHere's picture
NewHere
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Joined: Feb 2015

Went to the site.  Right now onl site and searched 

http://www.lifeextension.com/Search#q=Blood%20Test%20cancer&sort=relevancy&f:hierarchicalcategory=[Products]

Came up with 80 of them.  Laughing  Which one is it?  Will order and get it drawn. And probably be back asking you more quetions.  Cool

 

 

Ruthmomto4's picture
Ruthmomto4
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I hope it's so slow growing it never gets to give you a problem! 

darcher's picture
darcher
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I've read that chemo doesn't last forever since cancer can mutate and then the chemo becomes ineffective.  However, there is a strong chance it could take it out before it has an opportunity to mutate.  I wouldn't be so quick to dismiss it.  Call me a proponent of oncologists but I believe they've got the training and so forth which I don't.  It's fine to do the other things provided the doctors agree with it but don't ignore what they're tellling you to do. Granted, being on chemo is beyond horrible in many respects but most times it works which is why they do it. 

Mikenh's picture
Mikenh
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Cancer can mutate (funny to say that because cancer is mutations) so it is a valid concern. My friend with Lung Cancer took a drug which worked for twelve months and then it stopped working but his oncologist expected this as it has happened before and they had a second drug ready to go which takes care of the first cancer and the second. The oncologists feed information back to the drug companies and the drug companies come up with drugs and hopefully they've had lots of practice for whatever our cancers mutate into. Or if they don't, then we become the test subjects to develop new drugs for future patients.

NewHere's picture
NewHere
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That is why I am trying to avoid chemo as long as possible.  I was ready to start when I got the news and my oncologist said no, wait until symptomatic or scans show it is growing and spreading, because usually the chemo will work for about a year before becoming ineffective.  Some people may have it work longer, but generally a year.  So If I can kick it down the road, something else may come up.  I am going on chemo when the time comes.

darcher's picture
darcher
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  Cancer is a mutation so it having the ability to change makes sense.  The odd thing is it's capable of doing it so quickly.  That's above my paygrade to ponder so I'll leave that question to molecular biologists.  

  If Chemo is good for about a year that explains why they're giving me the same stuff as during the pre-op.  Since it was for a month and a half and it worked quite well, so they said, then it stands to reason to keep using it with there being a good amount of time left on that clock.  

 

NewHere's picture
NewHere
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Joined: Feb 2015

My oncologist siad usually a year is the number in general but other people are on the same chemo for longe periods of time, so do not worry too much about the number.   Plus it may knocking it all out, you may not need the year. 

At my initial surgery, the cancer was further along than the scans from even two weeks before, was into my abdominal wall and in many lymph nodes (11 out of 20).  There was a met on my lung at the time of the initial diagnosis, just too small to confirm at the time.  Kept in in control and had some size changes (again small) during chemo and it grew for sure went done.  In other words, it was not the greatest set-up from the get go.  The positive is that the chemo may have helped keep things in check for me, maybe reduce it, and perhaps some cocktail may work.  

Sounds like chemo is working real well for you. You will kick cancer's a-- :)

 

 

 

ReeRee2's picture
ReeRee2
Posts: 39
Joined: Oct 2017

Does anyone use CBD oil? I have read where It can kill cancer cells.

NewHere's picture
NewHere
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Joined: Feb 2015

It is another treatment that may or may not work.  There really needs to be more studies on these things, though I understand the difficulty because they can be witholding drugs that could work (this is really applicable to any treatment.  Such as even being in the control/placebo group when trying new drugs. )

Some info from NIH National Cancer Institute

https://www.cancer.gov/about-cancer/treatment/cam/patient/cannabis-pdq

 

 

  • The main active cannabinoid in Cannabis is delta-9-THC. Another active cannabinoid is cannabidiol (CBD), which may relieve pain, lower inflammation, and decrease anxiety without causing the "high" of delta-9-THC (see Question 2).
  • Cannabinoids can be taken by mouth, inhaled, or sprayed under the tongue (see Question 5).
  • Cannabis and cannabinoids have been studied in the laboratory and the clinic for relief of pain, nausea and vomitinganxiety, and loss of appetite (see Question 6 and Question 7).
  • Cannabis and cannabinoids may have benefits in treating the symptoms of cancer or the side effects of cancer therapies. There is growing interest in treating children for symptoms such as nausea with Cannabis and cannabinoids, although studies are limited (see Question 7).
  • Two cannabinoids (dronabinol and nabilone) are drugs approved by the U.S. Food and Drug Administration (FDA) for the prevention or treatment of chemotherapy -related nausea and vomiting (see Question 7 and Question 10).
  • **** Cannabis has been shown to kill cancer cells in the laboratory (see Question 6).
  • At this time, there is not enough evidence to recommend that patients inhale or ingest Cannabis as a treatment for cancer-related symptoms or side effects of cancer therapy (see Question 7).
  • Cannabis is not approved by the FDA for use as a cancer treatment (see Question 9).
carrieh's picture
carrieh
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If you go that route, make sure you use THC too...a lot of people read that CBD alone works on websites...but read the actual studies themselves (it's a combo of THC and CBD, and with no human studies the needed dosage is unknown) so, rule of thumb is get as much in your body as possible, as quickly as possible. Don't count on it to save you by itself. To date, 3 friends have died taking only CBD oil...don't trust websites selling things *Charolettes Web has good oil though...and go to sites like ROC to find quality oil at a discount..I suggest making it yourself!

androidlover1
Posts: 1
Joined: Apr 2018

Hi Carrieh,

Do you know anyone seen good results trying it with THC and CDB?

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

 It was suggested by someone to try CBD oil for nausia and lack of apetite. Looking at the above referenced article question 6 was a surprise. Based on what's wirtten it looks to have properties similar to chemo.   I can see why it would help with nausia and apetite but killing cancer itself is a new one.

 

  • Studies in mice and rats have shown that cannabinoids may inhibit tumor growth by causing cell death, blocking cell growth, and blocking the development of blood vessels needed by tumors to grow. Laboratory and animal studies have shown that cannabinoids may be able to kill cancer cells while protecting normal cells.
  • A study in mice showed that cannabinoids may protect against inflammation of the colon and may have potential in reducing the risk of colon cancer, and possibly in its treatment.
  • A laboratory study of delta-9-THC in hepatocellular carcinoma (liver cancer) cells showed that it damaged or killed the cancer cells. The same study of delta-9-THC in mouse models of liver cancer showed that it had antitumor effects. Delta-9-THC has been shown to cause these effects by acting on molecules that may also be found in non-small cell lung cancer cells and breast cancer cells.
NewHere's picture
NewHere
Posts: 1117
Joined: Feb 2015

How there is so much potential for CBD can kill cancer like that.  They need to step up research for things like this where there is a chance to kill cancer with less other damage (would need to buy stock in Dortio's though ;) )  Seems to be a different form than smoking pot.

 

abrub's picture
abrub
Posts: 2099
Joined: Mar 2010

You might want to start with a consult there. 

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

I’m doing Ayurvedic medicine under the guidance of Dr. Dhruva at UCSF’s integrative oncology center. It’s very similar to TCM. Maybe shoot him an email? Good luck and best wishes. I haven’t been on this site in a long time and I was sorry to see this, hang in there.

 

NewHere's picture
NewHere
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Joined: Feb 2015

I may shoot him an email shortly.  Had a scan today and now waiting to see if the shoe dropped.  

BRHMichigan's picture
BRHMichigan
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I will be getting asecond opinion from an Integrative Onc this Thursday. Had a CT scan today so this is the time for me to decide how long I can put off chemo.  I have been enjoying I.V. Vitamin C for a few months now. And ozone saunas. High dose Vitamin D. I took THC oil all through chemo & radiation pre surgery. Helped with appetite & pain management. I understand you have to take massive amount of THC for 90 days in order to possibly have it kill cancer. Rick Simpson and many others testify to the benefits. 

carrieh's picture
carrieh
Posts: 146
Joined: May 2012

Look at trials at Mayo Clinic...not sure if still open but they were accepting on an immunotherapy trial. Level 2 trial so do your research but thought I’d share. I was accepted but my doc said since I’m NED right now to wait and Stage 3 are safer? I’m a Stage 4 too..nothing left to cut out. Althoug, my last surgery...doctors here said it was pretty hopeless and I went to Mayo...they were like oh, yeah no big deal. I hope you have great doctors, surgeons ❤️ It can change everything...at least for a little while ❤️

carrieh's picture
carrieh
Posts: 146
Joined: May 2012

Someone else posted a thread about another trial....sounds promising. I haven't done a lot of reserach but perhaps...? It's a three week stay, according to thread.

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