Alternative treatment for stage 4 colorectal cancer -
I went through Fol-Fox with Oxyliplatin last year and it seemed to hold things in check, but as soon as I was off, the cancer took off. CEA markers are on a steady rise, and the tumors are growing somewhat rapidly.
Surgery isn't an option since I have so many tumors. From what I read, the Camptosar/Erbitux cocktail can slow things down for a while, but the tumors will continue to grow once they become resistant to the drugs. I'm just not sure I want to go back through chemo again (particularly for my wife, as it's hard on her to be a part of this), and it is poison.
So, anyone hearing about any success stories out there that aren't chemical related? Do you know of people like my situation and how long they've survived either with or without treatment?
I'm 54 and still feeling pretty good. Some shortness of breath, but no bleeding yet. Still pretty active, and have taken the past 4 months off work to spend time with family and friends while I still can.
Thoughts? Advice? Stories?
Thanks,
Brian
Comments
-
Alternatives
Hi Brian, I do not have any experience with alternatives but there is a member, John23, who is a big proponent of TCM (traditional chinese medicine) and he most likely will chime in with some possible ideas.
Personally I (stage IV CC) have been on Erbitux/CPT11 for 4 years or so and have had good results. I'm to the point where I take the meds for a while, then it shrinks or gets rid of the spots and I have had a few RFA (ablations) where they fry the tumor with heat/radio waves. I suppose I've been fortunate that it's been working for as long as it has. We are all different so there is no one size fits all with protocols.
Best of luck
-phil0 -
Did you tried other medical options rather than chemo?PhillieG said:Alternatives
Hi Brian, I do not have any experience with alternatives but there is a member, John23, who is a big proponent of TCM (traditional chinese medicine) and he most likely will chime in with some possible ideas.
Personally I (stage IV CC) have been on Erbitux/CPT11 for 4 years or so and have had good results. I'm to the point where I take the meds for a while, then it shrinks or gets rid of the spots and I have had a few RFA (ablations) where they fry the tumor with heat/radio waves. I suppose I've been fortunate that it's been working for as long as it has. We are all different so there is no one size fits all with protocols.
Best of luck
-phil
Mean , chemoembolization, RFA, or radiotherapy,? ln the other hand john 23 is a big expert in TCM send him a prived message , I'm sure will be glad to assist you!
Keep strength!0 -
Oncotyping and gene specific chemopepebcn said:Did you tried other medical options rather than chemo?
Mean , chemoembolization, RFA, or radiotherapy,? ln the other hand john 23 is a big expert in TCM send him a prived message , I'm sure will be glad to assist you!
Keep strength!
I suggest getting your cancer genetically tested. They can determine exactly what type of proteins are over or underexpressed in your cancer. They can then order chemo that has been clinically proven to work on your specific cancer. I started in may. I take abraxane and avastin. I have a few more mets than you and all has remained stable since march. I'm not trying to kill it. I'm jst trying to keep it stable. As it is. The only real side effect I have from my current treatment is hair loss. I spend a few days after chemo resting and generally feeling bad but have 2.5 good weeks afterward. I suggest staying on top of this before things get down. Once the lungs start having problems, anything can happen at any time.0 -
We are here for you!pepebcn said:Did you tried other medical options rather than chemo?
Mean , chemoembolization, RFA, or radiotherapy,? ln the other hand john 23 is a big expert in TCM send him a prived message , I'm sure will be glad to assist you!
Keep strength!
Would definitely start with good nutrient, it can't hurt! Stay positive and fight!!
Hugs!0 -
Mtntownsen, Ask DR aboutNana b said:We are here for you!
Would definitely start with good nutrient, it can't hurt! Stay positive and fight!!
Hugs!
Mtntownsen, Ask DR about Vectiix and irinirecan as i know of a couple stage 4 colon members her who have responded well to it.
New chemotherapeutic drugs are now being studied in clinical trials throughout the country. Among them is an investigational agent known as irinotecan HCI (CPT-11), which has shown promise in treating people with advanced metastatic colon cancer. Chemotherapy for high-risk patients whose cancer has spread to the liver continues to be an active area of research. In some cases drugs that can be delivered directly to the liver are used
Also a chemo called Vectibix has been very effective in some members here in CSN
What Vectibix Is Used For:
Vectibix is used to treat colorectal cancer that has spread. It is used to treat colon cancers that express EGFR and disease that has gotten worse either on or following fluoropyrimidine, oxaliplatin and irinotecan containing chemotherapy regimens.
Note: If a drug has been approved for one use, physicians may elect to use this same drug for other problems if they believe it may be helpful.
How Vectibix Is Given:
Vectibix is given through an infusion into a vein (intravenous, IV). An infusion pump is used to give Vectibix.
The amount of Vectibix that you will receive depends on many factors, including your height and weight, your general health or other health problems, and the type of cancer or condition you have. Your doctor will determine your exact Vectibix dosage and schedule.
refer to the link below for more info
http://www.businessweek.com/news/2010-04-18/amgen-s-vectibix-won-t-help-cancer-patients-with-wrong-genes.html0 -
Brian -
Re:
"I went through Fol-Fox with Oxyliplatin last year and it seemed
to hold things in check, but as soon as I was off, the cancer took off. "
That scenario seems to happen much too often, but that's no reason
to not continue the treatments if the treatments aren't killing you!
I worry about those who get so sick from the treatments that they feel
that they're going to die with more of it, and yet continue the treatments
in spite of the treatments not working. The fear of not doing what
western medicine says to do, is a big part of the overall problem.
Phil's physicians are using chemo to keep the cancer at bay,
and he's been doing great! John (snommintj) physicians appear
to be using the same concept, to keep cancer in check and by
treating it as a "chronic disease", rather than attempt to totally
eradicate it.
It might be best to take that route, since there really doesn't appear
to be any western medicine that will eradicate it all. Yes, some claim
it's"cured them", but it's certainly been more rare than normal.
As far as TCM? TCM works, there is absolutely no doubt in my
mind about that. It's been used exclusively for thousand of years
prior to the areas becoming westernized, and it's worked fine
for that long. Now in China and Asia, it is practiced along with
western medicine, and you have a choice in hospitals to choose
one or the other, or both.
With cancer, it's a difficult choice, since the vast majority of
cancer victims and physicians you'll ever see here, will tell you
that nothing less than western medicine can help anyone with cancer.
Cancer is scary stuff! It's not called a "terminal disease" without
a valid reason.
TCM and herbal therapy takes longer than chemo or radiation
to do what has to be done, and too often, cancer victim doesn't
have the time to allow it to work. Some cancers can grow quickly,
and if in a critical area (where it might kill you in a week or month),
something that works faster to stop the cancer from going further
is necessary. Then once things are at bay, there's no reason not
to try alternatives.
You can use TCM along with conventional western medicine,
just as it's done in China. It's found to be helpful to relieve the
many side effects of western medicine cancer drugs, including
the side effects of radiation. And, it can also increase western
medicine's effectiveness!
I chose to use imported Chinese herbs exclusively, since they
said chemotherapy was a 50/50 shot, and possibly not work
at all. That was almost four years ago. There are several others
on this board, that have used juicing, etc, instead, and are also still
here to talk about it. So don't think for a minute, that alternatives
aren't good to try, or that can't be beneficial.
I had asked both my oncologists the same questions:
Can you guarantee chemo will kill my cancer cells?
No, there's no guarantee.
Can you guarantee that after chemo, my cancer won't return?
No, no guarantee.
Can you guarantee me that it will work at all?
No.... no guarantee!
Ok then, can you at least guarantee that chemo won't cause a second cancer?
No, absolutely not.
A guarantee that it won't cause me to have neurological problems, some permanent?
No, absolutely not.
Can you at least guarantee me that it won't make me too weak to support other therapies?
No, we're sorry, we try, but no guarantees.....
Then they ask:
Will TCM give you any guarantees?
Well.... There are no guarantees that it will work at all either, but
It's guaranteed not to cause second cancers
It's guaranteed not to cause neurological problems, temporary or permanent.
It's guaranteed not to leave me too weak to support any other therapies...
In fact, it actually builds immune system responses, rather than destroys them
like western medicine, and often, that's enough for it to continue killing
cancer cells.
The bottom line? Will it work for you?
There are absolutely no guarantees; you'll be betting your life on what
western medicine calls an "unproven" practice.
Yes, it's thousands of years old; and it has been practiced on billions and
billions of humans over that period of time very successfully for a myriad
of diseases, including what we call cancer. I'm not too sure why it remains
"unproven", except to those that are doing whatever they can to sustain
their present income of their present practice....?
Yes, chemotherapy works to kill cancer tumors, but it will not kill a cancer
cell that is -not- growing faster than it's surrounding cells. Our immune system,
on the other hand, has the capability of destroying an individual cancer cell,
regardless of where in our body it might be.
Most people's immune system does exactly that! That's why some of us get
cancer, while others never do. The quest for a cure should be in the direction
of fixing immune systems that aren't doing what they should, not finding some
man-made concoction to do what mother nature should be doing....
If they ever manage to perfect treatments of western medicine to use our
own immune system to do the battle, we will finally have a cure for cancer.
That's -my- opinion!
I provided many links to information on other threads that you should be able
to locate with a search. I'm in the process of making up a page or three of data
to post to the "blog" section of my "profile page" here, and hopefully it'll make
it easier to get information posted to a place that's easier to locate.
If I can help one person live when western medicine is failing them, it makes
my own life worthwhile.
Better health to you,
John0 -
I'll be using IV Vitamin C therapy
Here's the info for IV Vitamin C therapy at the Univ Kansas Med Ctr website on integrative med:
http://integrativemed.kumc.edu/ivvitaminc.htm.
they also have a clinical trial there.
Leslie0 -
Hi Brian, I to am stage 4 cc
Hi Brian, I to am stage 4 cc with several small mets to both lungs. I am not a cadidate for surgery at this time, but who knows. I am 58 and feeling good. I am currently doing trials at UCSF. I am on Gleevec, Cyclophoshamide and good ol' Avastin. I have scans this coming Monday and will get the results the next Mon. when I go to SF. I too have been on ocxy and irronotecan and it held it off or lessened it but it came back when I took a break. I have currently been on this trial since the beginning of June. My new onc in SF says she is not expecting this to be a cure, but to keep me healthy until something better comes along. Best to you. Jean0 -
Thanks, Phil, for yourPhillieG said:Alternatives
Hi Brian, I do not have any experience with alternatives but there is a member, John23, who is a big proponent of TCM (traditional chinese medicine) and he most likely will chime in with some possible ideas.
Personally I (stage IV CC) have been on Erbitux/CPT11 for 4 years or so and have had good results. I'm to the point where I take the meds for a while, then it shrinks or gets rid of the spots and I have had a few RFA (ablations) where they fry the tumor with heat/radio waves. I suppose I've been fortunate that it's been working for as long as it has. We are all different so there is no one size fits all with protocols.
Best of luck
-phil
Thanks, Phil, for your comments about your treatment. Have you been working through this whole thing?
Did they give you a terminal diagnosis early on? Seems like you're beating if they did!
Brian0 -
Thanks, Nana b!Nana b said:We are here for you!
Would definitely start with good nutrient, it can't hurt! Stay positive and fight!!
Hugs!
I am staying
Thanks, Nana b!
I am staying positive and I'm am fighting :-)
Brian0 -
Thanks, pepebcn!pepebcn said:Did you tried other medical options rather than chemo?
Mean , chemoembolization, RFA, or radiotherapy,? ln the other hand john 23 is a big expert in TCM send him a prived message , I'm sure will be glad to assist you!
Keep strength!
Brian
Thanks, pepebcn!
Brian0 -
Thanks Snommintj! Keeping itsnommintj said:Oncotyping and gene specific chemo
I suggest getting your cancer genetically tested. They can determine exactly what type of proteins are over or underexpressed in your cancer. They can then order chemo that has been clinically proven to work on your specific cancer. I started in may. I take abraxane and avastin. I have a few more mets than you and all has remained stable since march. I'm not trying to kill it. I'm jst trying to keep it stable. As it is. The only real side effect I have from my current treatment is hair loss. I spend a few days after chemo resting and generally feeling bad but have 2.5 good weeks afterward. I suggest staying on top of this before things get down. Once the lungs start having problems, anything can happen at any time.
Thanks Snommintj! Keeping it stable is what I'm working towards, as the oncologists don't think it's going away...
Brian0 -
Thanks HeartofSoul for allHeartofSoul said:Mtntownsen, Ask DR about
Mtntownsen, Ask DR about Vectiix and irinirecan as i know of a couple stage 4 colon members her who have responded well to it.
New chemotherapeutic drugs are now being studied in clinical trials throughout the country. Among them is an investigational agent known as irinotecan HCI (CPT-11), which has shown promise in treating people with advanced metastatic colon cancer. Chemotherapy for high-risk patients whose cancer has spread to the liver continues to be an active area of research. In some cases drugs that can be delivered directly to the liver are used
Also a chemo called Vectibix has been very effective in some members here in CSN
What Vectibix Is Used For:
Vectibix is used to treat colorectal cancer that has spread. It is used to treat colon cancers that express EGFR and disease that has gotten worse either on or following fluoropyrimidine, oxaliplatin and irinotecan containing chemotherapy regimens.
Note: If a drug has been approved for one use, physicians may elect to use this same drug for other problems if they believe it may be helpful.
How Vectibix Is Given:
Vectibix is given through an infusion into a vein (intravenous, IV). An infusion pump is used to give Vectibix.
The amount of Vectibix that you will receive depends on many factors, including your height and weight, your general health or other health problems, and the type of cancer or condition you have. Your doctor will determine your exact Vectibix dosage and schedule.
refer to the link below for more info
http://www.businessweek.com/news/2010-04-18/amgen-s-vectibix-won-t-help-cancer-patients-with-wrong-genes.html
Thanks HeartofSoul for all the information. I've been looking at some of these, but so far I'm not a candidate for the clinical trials (not sure if I would want to do them anyway). I've rec'd a second opinion as well and rec'd pretty much the same type of therapy information. I'm cool with it - we'll see how it goes. I'm still looking at some natural therapy ideas, but even the local naturopath docs don't think cancer can be kicked without chemicals, but I know some people that have been treated naturally don't agree with that.
Brian0 -
whoa!John23 said:Brian -
Re:
"I went through Fol-Fox with Oxyliplatin last year and it seemed
to hold things in check, but as soon as I was off, the cancer took off. "
That scenario seems to happen much too often, but that's no reason
to not continue the treatments if the treatments aren't killing you!
I worry about those who get so sick from the treatments that they feel
that they're going to die with more of it, and yet continue the treatments
in spite of the treatments not working. The fear of not doing what
western medicine says to do, is a big part of the overall problem.
Phil's physicians are using chemo to keep the cancer at bay,
and he's been doing great! John (snommintj) physicians appear
to be using the same concept, to keep cancer in check and by
treating it as a "chronic disease", rather than attempt to totally
eradicate it.
It might be best to take that route, since there really doesn't appear
to be any western medicine that will eradicate it all. Yes, some claim
it's"cured them", but it's certainly been more rare than normal.
As far as TCM? TCM works, there is absolutely no doubt in my
mind about that. It's been used exclusively for thousand of years
prior to the areas becoming westernized, and it's worked fine
for that long. Now in China and Asia, it is practiced along with
western medicine, and you have a choice in hospitals to choose
one or the other, or both.
With cancer, it's a difficult choice, since the vast majority of
cancer victims and physicians you'll ever see here, will tell you
that nothing less than western medicine can help anyone with cancer.
Cancer is scary stuff! It's not called a "terminal disease" without
a valid reason.
TCM and herbal therapy takes longer than chemo or radiation
to do what has to be done, and too often, cancer victim doesn't
have the time to allow it to work. Some cancers can grow quickly,
and if in a critical area (where it might kill you in a week or month),
something that works faster to stop the cancer from going further
is necessary. Then once things are at bay, there's no reason not
to try alternatives.
You can use TCM along with conventional western medicine,
just as it's done in China. It's found to be helpful to relieve the
many side effects of western medicine cancer drugs, including
the side effects of radiation. And, it can also increase western
medicine's effectiveness!
I chose to use imported Chinese herbs exclusively, since they
said chemotherapy was a 50/50 shot, and possibly not work
at all. That was almost four years ago. There are several others
on this board, that have used juicing, etc, instead, and are also still
here to talk about it. So don't think for a minute, that alternatives
aren't good to try, or that can't be beneficial.
I had asked both my oncologists the same questions:
Can you guarantee chemo will kill my cancer cells?
No, there's no guarantee.
Can you guarantee that after chemo, my cancer won't return?
No, no guarantee.
Can you guarantee me that it will work at all?
No.... no guarantee!
Ok then, can you at least guarantee that chemo won't cause a second cancer?
No, absolutely not.
A guarantee that it won't cause me to have neurological problems, some permanent?
No, absolutely not.
Can you at least guarantee me that it won't make me too weak to support other therapies?
No, we're sorry, we try, but no guarantees.....
Then they ask:
Will TCM give you any guarantees?
Well.... There are no guarantees that it will work at all either, but
It's guaranteed not to cause second cancers
It's guaranteed not to cause neurological problems, temporary or permanent.
It's guaranteed not to leave me too weak to support any other therapies...
In fact, it actually builds immune system responses, rather than destroys them
like western medicine, and often, that's enough for it to continue killing
cancer cells.
The bottom line? Will it work for you?
There are absolutely no guarantees; you'll be betting your life on what
western medicine calls an "unproven" practice.
Yes, it's thousands of years old; and it has been practiced on billions and
billions of humans over that period of time very successfully for a myriad
of diseases, including what we call cancer. I'm not too sure why it remains
"unproven", except to those that are doing whatever they can to sustain
their present income of their present practice....?
Yes, chemotherapy works to kill cancer tumors, but it will not kill a cancer
cell that is -not- growing faster than it's surrounding cells. Our immune system,
on the other hand, has the capability of destroying an individual cancer cell,
regardless of where in our body it might be.
Most people's immune system does exactly that! That's why some of us get
cancer, while others never do. The quest for a cure should be in the direction
of fixing immune systems that aren't doing what they should, not finding some
man-made concoction to do what mother nature should be doing....
If they ever manage to perfect treatments of western medicine to use our
own immune system to do the battle, we will finally have a cure for cancer.
That's -my- opinion!
I provided many links to information on other threads that you should be able
to locate with a search. I'm in the process of making up a page or three of data
to post to the "blog" section of my "profile page" here, and hopefully it'll make
it easier to get information posted to a place that's easier to locate.
If I can help one person live when western medicine is failing them, it makes
my own life worthwhile.
Better health to you,
John
John - that was an incredibly detailed email about how you view treatment, both western & eastern. Thank you for sending this along. I assume you aren't recreating the story each time someone like me asks a question, as that would take a long time!!! Cut & paste works pretty well :-)
I will do some searches on this site, as I really haven't done that yet.
As far as time to progression goes for me, the tumors are growing pretty fast according to the oncologists, but I think they're still small according to the scans.
I don't think I have the strength of will to radically change my diet around to a completely herb type diet (not to mention I only have 13 inches of colon), so a lot of foods tend to go through pretty fast. Hmmm, but no doubt there's quite a bit more I could do.
I do get the 'no guarantees' statements you make - I think that's why my wife doesn't want me to be on chemo - at least put something into my body that's good for it, rather than poison that will mess up my body with some hope of slowing down the cancer.
I've got to run, but I will re-read your email again when I have more time.
Thanks again,
Brian0 -
Thanks, Leslie - I'll checklesvanb said:I'll be using IV Vitamin C therapy
Here's the info for IV Vitamin C therapy at the Univ Kansas Med Ctr website on integrative med:
http://integrativemed.kumc.edu/ivvitaminc.htm.
they also have a clinical trial there.
Leslie
Thanks, Leslie - I'll check it out (I hadn't heard of this before).
Brian0 -
Thanks, Jean - I'll bechicoturner said:Hi Brian, I to am stage 4 cc
Hi Brian, I to am stage 4 cc with several small mets to both lungs. I am not a cadidate for surgery at this time, but who knows. I am 58 and feeling good. I am currently doing trials at UCSF. I am on Gleevec, Cyclophoshamide and good ol' Avastin. I have scans this coming Monday and will get the results the next Mon. when I go to SF. I too have been on ocxy and irronotecan and it held it off or lessened it but it came back when I took a break. I have currently been on this trial since the beginning of June. My new onc in SF says she is not expecting this to be a cure, but to keep me healthy until something better comes along. Best to you. Jean
Thanks, Jean - I'll be curious to see how your scan results turn out.
I can't / won't do Avastin, as it caused a rupture to my insides last summer, so I'm kind of afraid of that drug. Right now I'm slated to start Camptosar/Erbitux on the 17th.
I'll check back to see how you're doing.
Brian0 -
Brian -mnttownsend said:whoa!
John - that was an incredibly detailed email about how you view treatment, both western & eastern. Thank you for sending this along. I assume you aren't recreating the story each time someone like me asks a question, as that would take a long time!!! Cut & paste works pretty well :-)
I will do some searches on this site, as I really haven't done that yet.
As far as time to progression goes for me, the tumors are growing pretty fast according to the oncologists, but I think they're still small according to the scans.
I don't think I have the strength of will to radically change my diet around to a completely herb type diet (not to mention I only have 13 inches of colon), so a lot of foods tend to go through pretty fast. Hmmm, but no doubt there's quite a bit more I could do.
I do get the 'no guarantees' statements you make - I think that's why my wife doesn't want me to be on chemo - at least put something into my body that's good for it, rather than poison that will mess up my body with some hope of slowing down the cancer.
I've got to run, but I will re-read your email again when I have more time.
Thanks again,
Brian
Re:
"I don't think I have the strength of will to radically change my
diet around to a completely herb type diet "
TCM's herbs aren't used as a "diet", they are brewed on your stovetop
and ingested as a broth twice or three times daily. The herbal treatments
aren't continued forever, they are taken until there is a change, then stopped.
These are not grocery store herbs, these are imported medicinal strength
herbs, and every bit as powerful as any medication.
If you decide to go this route, you should do so only with a qualified
doctor of TCM (or at least a competent herbalist) to rely on, if a
problem occurs.
The herbs I've listed at this site are the ones I've used. They are
all well known to do exactly what is listed. In excess they can do
harm, just as ingesting too much water can drown you; You must
have a TCM doctor available to insure you're doing OK.
I did not change one thing about my all grease and fat diet, and
do drink some fine Bourbon on occasion....
Did it work? I don't know, perhaps it's just the luck of the draw?
Just me and a few billion Chinese, I suppose?
I keep in mind something my oncologist(s) said to me at the onset
of this cancer trip...... 26% will live on after surgery even if they
do nothing else after the tumor(s) are removed. Of those that do
Chemo, etc... about 28% survive. That gives a 2% advantage
to chemo, etc..... and that does not include deaths from second
cancers caused due to the carcinogenic chemicals used in "chemo",
or the neurological problems that at times are permanent.
Chemo can work fast, and radiation is faster; both have some serious
concerns, but if it's speed will save your life where nothing else will,
it's better to go with it and stay alive. TCM and other options can
be used when you are alive..... Being dead is a real bummer, ya' know?
TCM is great, but it can't bring you back from the grave.
I have met people with late-term cancer that had turned to TCM
and herbal therapy. They were still alive and doing very well with
no signs of cancer. They attributed their existence to the herbs,
but I will not do that. I simply have no absolute proof. I do know
that they told me I had cancer throughout my body, and without
chemo I wouldn't be here typing.... That was almost four years
ago; no chemo, no radiation, still here.
I may eventually die of cancer, but it will be with the rest of me still
healthy and without the damage others have suffered.
Fear keeps the best of us from trying things that are new to all others,
but the "newness" is only among those that never knew about a
science that is thousands of years old, and continues to be practiced
today, alongside western medicine.
Read and learn, but you have little time to spare, so please explore
all your mainstream options. Brain cancer isn't kind.... it's nasty,
and I truly want to see you around long enough to try TCM....
My best wishes are to you and yours.
John
Oh, and PS.... Yeah, I type fast and detest c&p...0 -
Camptosar (cpt 11 -irinotecan both the same) has demonstrated tomnttownsend said:Thanks, Jean - I'll be
Thanks, Jean - I'll be curious to see how your scan results turn out.
I can't / won't do Avastin, as it caused a rupture to my insides last summer, so I'm kind of afraid of that drug. Right now I'm slated to start Camptosar/Erbitux on the 17th.
I'll check back to see how you're doing.
Brian
work fairly well with same records of success than oxali and probably less side effects ! ( just don't be depress for loosing most of your hair!)
Hope it works good to you too!
Cheer up man!0
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