Any ideas on natural supplements along with chemo
I was just diagnosed with colorectal cancer a month ago. After my colonoscopy the doctor came in and told me I have stage 4 colorectal cancer. He said it is treatable but not curable. He also told me surgery is not an option. I am taking the folfox chemo treatment every 2 weeks. I've had my first one. I'm just wondering if anyone has any ideas of what can help naturally. I have changed my eating habits, mostly organic. I did find during the real bad nauseous time after chemo that ginger helped. This is all new to me. I went in the hospital thinking I was having a gall bladder attack and finding out I have stage 4 colorectal cancer.
Comments
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Welcome to the forum, mommin
I am sorry that you find yourself here, but now that you are, know that we are here to help you along your journey.
Be patient waiting for replies, some days the fourm moves right along, other days it is slow, but people will be here to answer your questions.
I confess that I did not take any supplements while going through chemo and radiation. I've never been one to take pills, so I just didn't get into them.
There are others, many others, here that do take suppliments, and they will be along to share with you their expereince and advice.
You do say you had nausea after your first FOLFOX (I also was on that regime), did they give your any meds to take? I can't remember what I was on (oh yes, that is a good feeling, knowing it was long enough ago that I can't remember), but they really helped.
Do you have the 5 FU 42 hour pump after the FOLFOX infusion?
We're here to fill you in on anything you want to know. Of course, we don't take presedence over your Doctors, but we've accumulated allot of knowledge on our own journeys and are willing to share.
Visit often.
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Thanks so much. I do have aTrubrit said:Welcome to the forum, mommin
I am sorry that you find yourself here, but now that you are, know that we are here to help you along your journey.
Be patient waiting for replies, some days the fourm moves right along, other days it is slow, but people will be here to answer your questions.
I confess that I did not take any supplements while going through chemo and radiation. I've never been one to take pills, so I just didn't get into them.
There are others, many others, here that do take suppliments, and they will be along to share with you their expereince and advice.
You do say you had nausea after your first FOLFOX (I also was on that regime), did they give your any meds to take? I can't remember what I was on (oh yes, that is a good feeling, knowing it was long enough ago that I can't remember), but they really helped.
Do you have the 5 FU 42 hour pump after the FOLFOX infusion?
We're here to fill you in on anything you want to know. Of course, we don't take presedence over your Doctors, but we've accumulated allot of knowledge on our own journeys and are willing to share.
Visit often.
Thanks so much. I do have a 46 hour pump. They have me Zofran. It helped a little but about the 4th day nothing helped. Someone told me to try ginger root tablets. They did help some but that was more like the 6th day and I was starting to feel better.
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Questionsmommin57 said:Thanks so much. I do have a
Thanks so much. I do have a 46 hour pump. They have me Zofran. It helped a little but about the 4th day nothing helped. Someone told me to try ginger root tablets. They did help some but that was more like the 6th day and I was starting to feel better.
I hope you have a nice little notebook for your visits with the Oncologist. Write down everything you are going though, and go over everything with your Onc at your appointment.
I know the Doc's don't want you to be nauseous, so be sure and talk to her/him about it on your next visit.
Good luck with the treatments and we're here for you.
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Marijuana
Marijuana works great for nausea I get mine in edibles.
Stage IV sucks, but you can do well. I've been around 4 plus years after Stage IV diagnosis, and quality of life has been great. After diagnosis I started a two year college in political Science and graduated with a 3.78 GPA.
In other words you can do this!!!
Winter Marie
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i agree
good old fashion marijuana ... i smoked mine... my hubby had one waiting for me when i got done with treatment and I never had a real big issue with nausea... if i didnt feel like eating ..a couple puffs and I could eat some.. I know now why people call it a mediciene ... as a young adult I used it to get high... but after cancer and on treatment it made me feel normal after the roids and all the posion they put in your body.... try the edibiles if you never sn=miked before... be mindful of the dosages on the labels...
Lisa
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getting more mileage
You might want to tell more about your diagnosis, possiblities discussed, caregiver support, and tests. My wife and I have found more baseline blood tests, like CA19-9, CA72-4, vitamin D, GGTP, LDH, hsCRP, ESR, fibrinogen and D-dimer useful too. Although qualified, technically currrent, medical support for these tests may be immediately scarce, early data is irreplaceable and can be useful long term. Additional medical opinions and options may radically improve your future.
...He also told me surgery is not an option.
This is often a yellow or red flag that a patient's treatment is not as aggressively optimum and up to date as is possible, as experienced here, at Colon Club and ColonChat.net. Multimodal treatments (combinations of chemo, surgery, radiation, supplements and experiemental treatments) with multiple surgeries have won tremendous gains in life and quality of life, even apparent cures for some stage IV patients. Without diligent testing with biomarkers and curative efforts, no one really knows your possible futures. Statistics quoted tell more about old therapies and single treatment regimens than several possible combinations. Standard workups are not even close to diligent, IMHO. The trick is getting out of the "standard" rut with tired old "standard" recommendations and results, to find better/best current techniques to a much better future.
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Life Extension Foundation probably has one of the more easily accessible and credible series of articles (links) on surgery, supplements and affordable alternatives for colorectal cancer. They also discuss supplements on the phone with members and customers, ranging from general staff to medically trained support with ND degrees, focused on cancer. We buy 1-2 types of hard-to-get supplements from LEF, got their membership and they seem happy for several conversations with the most specialized NDs. The combination of supplements with chemo is an ongoing discussion, where doctors vary greatly in their approach and experience with particular chemo regimens.
Several technologies that may be of special interest for "incurables" and "inoperables" are often presurgical cimetidine (without an obstruction, my wife would have been "inoperable" in US evaluations but she's done well with surgeries), hepatic arterial infusion for liver metastases, and in advanced trials but doable now with a supportive expertise is metronomic xeloda with celecoxib.
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This is all very confusing totanstaafl said:getting more mileage
You might want to tell more about your diagnosis, possiblities discussed, caregiver support, and tests. My wife and I have found more baseline blood tests, like CA19-9, CA72-4, vitamin D, GGTP, LDH, hsCRP, ESR, fibrinogen and D-dimer useful too. Although qualified, technically currrent, medical support for these tests may be immediately scarce, early data is irreplaceable and can be useful long term. Additional medical opinions and options may radically improve your future.
...He also told me surgery is not an option.
This is often a yellow or red flag that a patient's treatment is not as aggressively optimum and up to date as is possible, as experienced here, at Colon Club and ColonChat.net. Multimodal treatments (combinations of chemo, surgery, radiation, supplements and experiemental treatments) with multiple surgeries have won tremendous gains in life and quality of life, even apparent cures for some stage IV patients. Without diligent testing with biomarkers and curative efforts, no one really knows your possible futures. Statistics quoted tell more about old therapies and single treatment regimens than several possible combinations. Standard workups are not even close to diligent, IMHO. The trick is getting out of the "standard" rut with tired old "standard" recommendations and results, to find better/best current techniques to a much better future.
----
Life Extension Foundation probably has one of the more easily accessible and credible series of articles (links) on surgery, supplements and affordable alternatives for colorectal cancer. They also discuss supplements on the phone with members and customers, ranging from general staff to medically trained support with ND degrees, focused on cancer. We buy 1-2 types of hard-to-get supplements from LEF, got their membership and they seem happy for several conversations with the most specialized NDs. The combination of supplements with chemo is an ongoing discussion, where doctors vary greatly in their approach and experience with particular chemo regimens.
Several technologies that may be of special interest for "incurables" and "inoperables" are often presurgical cimetidine (without an obstruction, my wife would have been "inoperable" in US evaluations but she's done well with surgeries), hepatic arterial infusion for liver metastases, and in advanced trials but doable now with a supportive expertise is metronomic xeloda with celecoxib.
This is all very confusing to me. I had a colonoscopy, endoscopy, and 2 biopsies. My biggest problem is we have no insurance. We are on a charity program at the hospital here. They pay all my tests and hospital visits but not any of the doctors. My hands seem tied because we can't afford anything else. Every chemo treatment has to be approved by the hospital and they are in no hurry to approve them. I'm suppose to get treatment 2 Monday but they told me it probably won't be happening. I'll find out tomorrow. I'm not really sure what else to do.
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Just finished second round of Folfox
I just had the pump removed today from my second Folfox cycle. I'm cycle 2 day 3. Ginger works for me on most days. My oncologist prescribed .5 mg Lorazepam to take sublingualy if the Zofran doesn't work. I'm sorry for your diagnosis. Im new to the forums but the support is amazing.
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Terriblemommin57 said:This is all very confusing to
This is all very confusing to me. I had a colonoscopy, endoscopy, and 2 biopsies. My biggest problem is we have no insurance. We are on a charity program at the hospital here. They pay all my tests and hospital visits but not any of the doctors. My hands seem tied because we can't afford anything else. Every chemo treatment has to be approved by the hospital and they are in no hurry to approve them. I'm suppose to get treatment 2 Monday but they told me it probably won't be happening. I'll find out tomorrow. I'm not really sure what else to do.
I am so sorry that you do not have insurance which puts you at the mercy of the medical world. Still, I can't believe that they are not treating you like they would any other cancer patient. Time is precious, and it is so important to be getting the right treatments at the right time.
I pray that something works out for you soon.
Someone else here may be able to advise you better. Sadly all I can do is remember you in my prayers that your treatments will go ahead as they should.
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LorazepamYolllmbs said:Just finished second round of Folfox
I just had the pump removed today from my second Folfox cycle. I'm cycle 2 day 3. Ginger works for me on most days. My oncologist prescribed .5 mg Lorazepam to take sublingualy if the Zofran doesn't work. I'm sorry for your diagnosis. Im new to the forums but the support is amazing.
was the only thing that worked for my nausea. But my doc rx'ed 2 mg, 3x per day. It will make you sleep, but it really knocked out the nausea (which I consider the worst side effect). It's also an inexpensive drug, so even with charity care, they should be willing to prescribe it.
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Have you had a CT or PET scan?mommin57 said:This is all very confusing to
This is all very confusing to me. I had a colonoscopy, endoscopy, and 2 biopsies. My biggest problem is we have no insurance. We are on a charity program at the hospital here. They pay all my tests and hospital visits but not any of the doctors. My hands seem tied because we can't afford anything else. Every chemo treatment has to be approved by the hospital and they are in no hurry to approve them. I'm suppose to get treatment 2 Monday but they told me it probably won't be happening. I'll find out tomorrow. I'm not really sure what else to do.
I'm wondering how they figured out that you were stage 4...do you have tumors in other areas, like the liver or lungs?
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I had a c.t. scan. It showedannalexandria said:Have you had a CT or PET scan?
I'm wondering how they figured out that you were stage 4...do you have tumors in other areas, like the liver or lungs?
I had a c.t. scan. It showed a mass in the cecum, in the small intestines, in lymph nodes, and spots in my liver. He didn't say how many lymph nodes. They gave me pictures of the mass in the cecum. He said it has grown through the colon wall. That was pictures from the colonoscopy. I'm really not sure what questions to ask him.. A
ny ideas what to ask?
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I had to take my nausea pillsannalexandria said:Lorazepam
was the only thing that worked for my nausea. But my doc rx'ed 2 mg, 3x per day. It will make you sleep, but it really knocked out the nausea (which I consider the worst side effect). It's also an inexpensive drug, so even with charity care, they should be willing to prescribe it.
I had to take my nausea pills right when I left the ONC otherwise I would be in deep kimchi.
Room temp lemonaid was the only think other then water that I could drink. I did take vitamin D3, calcium, an 80 mg aspirin, B12, vitamin C, milk thistle and used tumeric as much as I could I stopped all this when I went NED, but last hear my CEA started going up and I started it all up again. No insurance, have you tried Obama care and going through the assistance Section?
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How do I check into ObamaNana b said:I had to take my nausea pills
I had to take my nausea pills right when I left the ONC otherwise I would be in deep kimchi.
Room temp lemonaid was the only think other then water that I could drink. I did take vitamin D3, calcium, an 80 mg aspirin, B12, vitamin C, milk thistle and used tumeric as much as I could I stopped all this when I went NED, but last hear my CEA started going up and I started it all up again. No insurance, have you tried Obama care and going through the assistance Section?
How do I check into Obama care?
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I look it up by my State bymommin57 said:How do I check into Obama
How do I check into Obama care?
I look it up by my State by entering "covered California.". Here is some info on it.
http://obamacarefacts.com/obamacare-facts.php
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Thanks so much. I'll checkNana b said:I look it up by my State by
I look it up by my State by entering "covered California.". Here is some info on it.
http://obamacarefacts.com/obamacare-facts.php
Thanks so much. I'll check into it. God bless.
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I would askmommin57 said:I had a c.t. scan. It showed
I had a c.t. scan. It showed a mass in the cecum, in the small intestines, in lymph nodes, and spots in my liver. He didn't say how many lymph nodes. They gave me pictures of the mass in the cecum. He said it has grown through the colon wall. That was pictures from the colonoscopy. I'm really not sure what questions to ask him.. A
ny ideas what to ask?
Which chemo regimen they want you to do. I have seen some people starting with FOLFIRI as the first line, rather than the more traditional FOLFOX. The "ox" part is oxiliplatin, which often has severe neuropathy as a side effect, so it would be worth discussing the other chemo as a possibility.
if the chemo is effective, you hopefully can get to the point where surgery becomes an option, which is really the ultimate goal.
I would also start taking 800 mg per day of Tagamet, an OTC antacid, if I was in this situation. there are studies that suggest it can reduce the chance of further spread from surgery, and may also help with that issue even when you're not in a surgical situation.
You mentioned Obamacare...you can go to healthcare.gov to start the process of getting covered. If you are low income you may be able to access Medicaid.
Keep us posted on how things are going!
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treatment
Doctors don't know everything...if you are not comfortable accepting "treatable but not curable" then I highly recommend you get a second opinion and also educate yourself on your options. Your second opinion may well agree that FOLFOX is the best first step...or they may have other things up their sleeve (e.g. FOLFOX + Avastin). I was told the same thing as you at dx and it turns out that HAI at Sloan Kettering was a godsend for me; it's likely the main reason I'm here today despite the odds.
As for supplements...I highly recommend you look into vitamin D levels, and if acceptable to your onc, consider supplementation. IMHO it's the most non-controversial supplement recommendation out there for CRC. Personally, I also do flaxseed oil, low-dose aspirin, PSK mushroom extract, and a highly bio-available curcumin compound. But that's just my preference; your thoughts may vary. I did my complementary therapy plan in consult with an integrated medicine dr at MSKCC, and ran it by my regular oncs (who of course had little to no training in complementary supplements). Here's a great evidence-based link to an MSKCC herb database which I referred to when considering supplements.
http://www.mskcc.org/cancer-care/integrative-medicine/about-herbs-botanicals-other-products
Also, just a couple caveats - my doc suggested not taking oral vitamin C supplements, or green tea (EGCG) while actively on chemo...there's some evidence they may make chemo less effective. Also, be careful about taking certain supplements long-term; some may have negative side effects (in my case, long term use of Prilosec may have caused some minor liver harm).
One last thing: IMHO regular exercise - as much as you can comfortably manage - is fantastic for CRC patients and survivors.
Best of luck,
Chip
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supplements and helpful sources of natural therapies
Someone already mentioned life extension web site (lef.org) and that is a great source of information that I have personally used. I heard about it from someone else on this site, and am very grateful. LEF has a section on Health Concerns and under that there are sections on Colon Cancer, and Chemotherapy.
Beating-Cancer-Gently.com (Bill Henderson) and ChrisBeatCancer.com (Chris Wark) web sites also have some good information. Chris Wark has many videos on youtube.
I have recently learned that Vitamin D is an important supplement for cancer. Several studies recently published on this. Bill recommends 25,000 IU per day for cancer patients but you MUST get your vitamin D levels tested frequently or too much can cause problems. A site on vitamin D is sunarc.org
Beating Cancer with Nutrition by Patrick Quillan was a very helpful book. Nutrition is so important.
I hope this is helpful.
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I'm another MSKergfpiv said:treatment
Doctors don't know everything...if you are not comfortable accepting "treatable but not curable" then I highly recommend you get a second opinion and also educate yourself on your options. Your second opinion may well agree that FOLFOX is the best first step...or they may have other things up their sleeve (e.g. FOLFOX + Avastin). I was told the same thing as you at dx and it turns out that HAI at Sloan Kettering was a godsend for me; it's likely the main reason I'm here today despite the odds.
As for supplements...I highly recommend you look into vitamin D levels, and if acceptable to your onc, consider supplementation. IMHO it's the most non-controversial supplement recommendation out there for CRC. Personally, I also do flaxseed oil, low-dose aspirin, PSK mushroom extract, and a highly bio-available curcumin compound. But that's just my preference; your thoughts may vary. I did my complementary therapy plan in consult with an integrated medicine dr at MSKCC, and ran it by my regular oncs (who of course had little to no training in complementary supplements). Here's a great evidence-based link to an MSKCC herb database which I referred to when considering supplements.
http://www.mskcc.org/cancer-care/integrative-medicine/about-herbs-botanicals-other-products
Also, just a couple caveats - my doc suggested not taking oral vitamin C supplements, or green tea (EGCG) while actively on chemo...there's some evidence they may make chemo less effective. Also, be careful about taking certain supplements long-term; some may have negative side effects (in my case, long term use of Prilosec may have caused some minor liver harm).
One last thing: IMHO regular exercise - as much as you can comfortably manage - is fantastic for CRC patients and survivors.
Best of luck,
Chip
Chip,
What is the curcumin that you take? I also take PSK under the advice of MSK integrative med, as well as high doses of vitamin D (required to keep my levels normal) I also take Milk Thistle and CoQ10 to balance out the statins I'm on. Who do you see in Integrative Med? I see Dr. Wesa.
Thanks,
Alice
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