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Supplements During Treatment

Kaniksu
Posts: 50
Joined: Nov 2015

I don't know about you but I have been having a lot of non cancer folks telling me I need to take supplements during my treatment.I spent some time researching last night and found this awesome, informational site where a specialist in our field has written great blogs with an amazing amount of information on all kinds of subjects relating to lymphoma.

http://www.cll-nhl.com

Hope you find it as informational as I do.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3188
Joined: May 2012

Informed opinion differs a lot on this subject, which is a popular one here.

Most experts agree that patients on chemo should avoid supplements, at least until approved by their doctor. Many supplemnts are known to impede the effectiveness of chemotherapy.

 

Simon24
Posts: 43
Joined: Oct 2015

Hi,

  While on R-CHOP my husband with (DLBCL) stopped taking Vitamin C because we read that it could interfere with his chemo.  I don't remember where we saw that information, but needless to say he stopped taking it during chemo.  He stopped taking most of the supplements he used to take with the exception of magnesium and B12. He was very anemic so we thought the B12 was probably not going to hurt.  The doctors asked him if he took any supplements before he started chemo and they did not object to those supplements for him.  Each person is different though and I would ask your oncologist what you can safely take.  We found this on the Mayo Clinic website and this might be helpful to you. too.  http://www.mayoclinic.org/drugs-supplements  Click on the supplement and then click on "Interactions". 

                                                                                                                                          Simone

 

 

lindary's picture
lindary
Posts: 624
Joined: Mar 2015

When I started my cancer/chemo journey I made a list. the first part was my prescriptions and the second part was the supplements. For all I put the dosage and when I took them and how many. The oncologist went over the lsit with me asking why? for each one. One precription was dropped (water pill). Certain supplements were dropped, some the amoutn ebing taken was alerted and some the time I took them was changed. The issue is that some supplements can itneract with some chemo drugs. I let the experts review things and tell me what to do. 

One example is that on the day I get Rituxan I am not to take my blood pressure pill. That is because Rituxan can lower the blood pressure so taking the pill the same day could bring down the blood pressure to a dangerous level. 

My recommnedation is to keep 1 list, like I did, that has prescriptions and supplements. You give that complete list any time they ask for a list of prescriptions. Trust me, it is the best we can do to help ourselves.

Linda

Anonymous user (not verified)

Here is an article from medscape on the topic of antioxidant supplements in particular. Many other studies have shown the same thing. I am living proof supplements don't necessarily prevent cancer. A family member who has melanoma was told by his doctor to absolutely avoid antioxidant supplements which studies have shown help melanoma to spread. We are talking supplements - NOT - foods or drinks containing natural antioxidants. Folks there are no magic bullets for lymphoma - yet. But I am confident they are not far off.

ihttp://www.medscape.com/viewarticle/828132  I apologize for not not knowing how to post a working link from an iPad. Its easy on a PC.

 

ayotnom2
Posts: 1
Joined: Jan 2016

A**holes - Everybody has one!!  Laughing   I was just recently diagnosed with CLL / SLL and I have done a ton or research because I am worried about chemo for the Lymphoma affecting my Leukemia and pushing it into a more aggressive form.  Unfortunately, both my father (CML) and my grandmother (CLL) died from their Leukemia's.  Although my grandmother lived until 82. So, before I do any type of Chemo that my Oncologist wants me to do - I am planning on changing my diet and adding various supplements to BUILD my immune system up and detox the cancerous cells already in my body. 

Everybody's cancer is individual and you have to advocate for yourself.  You can never have too much information!! Information helps you to make an informed decision on your treatment plan.  Keep a list like someone in another comment suggested so that when you are ready for standard treatment - your Oncologist will also have the information to base her decision on... Good Luck on your Journey!!

Anonymous user (not verified)

the link I posted is for an article on scientific research, not personal opinion. These studies are not at all anecdotal. Best of luck and well wishes for your recovery.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3188
Joined: May 2012

Thank you, GKH.  A fundamental differentiation, but one not everyone understands.

NANCYL1
Posts: 289
Joined: Jun 2012

KANIKSU:

 

MY doctors want to know what pills and supplements I might be taking.  Check with your doctors before you add supplements.  They might not go with other medication.

Also, be careful what websites you get information from.  I used to listen to a doctor on the radio who pushed supplements.  After awhile, it became clear that he seemed to be benefiting financially when people sent orders for supplements.

Nancy

lindary's picture
lindary
Posts: 624
Joined: Mar 2015

Before I started chemo I was researching my cancer and what people were saying about their treatments. I have read postings where people have said how their dr told them to stop taking certain supplements because it would effect how the chemo drugs work. In one case a person posted that they found one of hte herbal teas they drank contained a herb in it that was also in a supplement they were told to stop taking. 

It did make me realize that when going through chemo to be careful of what I put into my body. Food, drinks, supplements, etc. My oncologist has told me to not take ibuprofen when doing chemo so I also avoid my chai (starbucks), mexican & Indian foods. They all contain spices that have anti-inflammatory compontents like Ibuprofen does. Since I was on a 3 week routine for the chemo treaments I would often treat myself to a Chai about 2 days before my next chemo. I also avoid foods high in antiioxidants during treatments since some reports show that it can have a negative effect on cancer treatments. 

http://www.cancer.gov/about-cancer/causes-prevention/risk/diet/antioxidants-fact-sheet#q4

The chemo drugs are strong and the oncologist know dosages to give a patient to get the best results. If we take things that can affect how the drugs work without letting our dr know about it, we can be compromising our treatments. I would rather give up foods and drinks I like for a few months knowing it gives the chemo the best chance to work the way it is supposed to. I agree wiht my Drs, if in doubt don't take it. 

 

 

NANCYL1
Posts: 289
Joined: Jun 2012

Lindary:

Your post re supplements is very interesting.  It supports what I hear about supplements: always check with the doctor.

Nancy

Birder's picture
Birder
Posts: 29
Joined: Oct 2015

I stopped taking all my supplements just before my first R-CHOP. There was enough documentation out there, including my oncologist, to convince me to give chemo the very best opportunity I could.  So I'll wait until treatments are complete and then I think I'll have a fun review of which supplements I want to continue.  After all, none of them did a damn bit of good preventing cancer!  Best wishes!

Kaniksu
Posts: 50
Joined: Nov 2015

That was the advice from my oncologist....don't interrupt the known actions on the chemo drugs with supplements...I have chosen to listen to her.  It is just hard trying to deal with people that don't have cancer telling you what you should be doing......

lindary's picture
lindary
Posts: 624
Joined: Mar 2015

I know what you mean. I heard all sorts of things from people who lost a loved one to cancer. I think some of them were convinced that if the person they lost had done something different or ate healthier foods, they would have survived. 

One brother-in-law was diagnosed with stage 4 small cell lung cancer in 2005 and given 6 months. His roommate keep giving him a lot of health foods to help cure him. Several of his siblings, who live in another state, felt his Drs were incompetent and he should got better ones. They based it on the research they did on lung cancer (non-small cell lung cancer) and it seemed to take forever to get through to them that what they read about what not the same cancer that their brother had. 

So when I let them I had cancer I got all sorts of recommendations from that crew. Like you, I chose to listen to my drs first, other cancer survivors second and these well meaning relatives & friends. Well I nod and tell them what they said is interesting, then change the subject. 

I do make one exception. I work with some people who are from other countries. I am always interested in hearing what friends or family members back in their home land do when dealing with cancer. Not looking for a miracle cure, just hearing about differences in treatment, or not. 

Linda

Sal0101's picture
Sal0101
Posts: 123
Joined: Sep 2015

i was taken off of all supplements before my first treatment.  I was told to get all my nutrition from food only.  I'm not sure I'll bother going back to them!

Sharon

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

In my feeble opinion I would highly recommend finding a nutritionist approved by your oncologist.  The right fit can be very helpful indeed.  I would seek a professional and NOT the Internet.

I have walked the walk, talked the talk of health and nutrition yet I'm here.

I have oncologists one at Dana Farber Cancer Institue, Roswell Park Cancer institute and one in my hometown.  My oncologist and best friend (oncologists) all are firm believers in nutrition.  

Supplementation is tricky.  Buying the right product becomes a daunting task let alone considering your genes, their interactions with you, drugs......vitamins are even crazy in this world.  For example my oncologist put me on vitamin B12.  My nutritionist insisted on testing my blood to see what form of B12 I should take.   There is a HUGE difference.  The one my oncologist gave me could have hurt me.

Personally I get the vitamins in food form, I have  Great Success in this.

Because of my diagonsis, I Dammed my previous healthy lifestyle.  Every doctor from local to top national oncologist convinced me that had I not been so good with nutrition, I would be in much worse condition.  So I continue to raise the bar and eat well.

good luck.

 

Anonymous user (not verified)

i took vitamins and supplements for years. I mainntained my ideal body weight and was very, very active. In the years leading up to my diagnosis I was advised to use nutrition, exercise, rest and supplements to fight my inexplicable fatigue. My wife cooks only organic and has for years. Yet here I am, stage IV lymphoma. I am convinced that most cancer is caused by random exposure to chemicals and/ or radiation. Dumb luck in other words. A single episode of exposure to dioxin for example may fester for decades before presenting as lymphoma? What is lymphoma anyway? It is a situation where the dna in a single white cell is damaged. This cell then starts to clone itself. This may happen several times over a lifetime but the immune system kills most of them. However one little guy hides and festers possibly for decades and then goes crazy producing billions of clones. Then there is the genetic factor - naturally occuring dna transmutation. Eat well, eat little and that may help. No doubt about that. However there is no defense against random events. People with healthy lifestyles get cancer. Its just a fact. And I see no evidence that these healthy people, unlike the people living unhealthy lifestyles, are less likely to get lymphoma. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3188
Joined: May 2012

 

I agree with what GKH wrote here so much that I just had to say so.  Oncology does not really know why one individual gets lymphoma, but another does not, except for the randomness GK described.

Good nutrition is always a good thing, and promotes general health, even if it does not prevent cancer or the recurrance of cancer.  But many segments of our society view good eating as a MORAL imperative, not just a good idea.  Some (who I have met) see an occasional hot dog not as an indulgence, but as WRONG.  Cigarette smokers are not stupid in their view, but EVIL.  I have never smoked in my life, and do indeed regard smoking as the dumbest thing a person can do, but it does not make the smoker morally depraved.

Think of a human individual as a planet hurling through space.  One will randomly get hit by a meteor or comet, most won't. It is not becasue one planet did something "wrong" when the others didn't.   So too with cancer: one guy will get it, another won't.  If I may get a little "Freudian", most obsession over diet ties into a false sense of control that people naturally desire; they want to know that they are "doing the right thing," and "therefore won't get sick."  But it does not work that way; the evidence refutes it.

A dear friend named Gary was dying of prostate cancer two years ago in Hospice.  He had a week or less to live.  His daughter, who is an RN, and a health "nut," was in the room.  Another dear friend, Gary's soulmate, walked in with a milkshake, which he took and devoured; he had been unwilling to eat or drink until he saw that milkshake.  It did him a world of good.   His daughter pulled me outside and said, "How dare her give him that sugar ! It is going to help the cancer !"    I was stunned at her ignorance, her disconnect from where Gary was at on his pending death.   A man with 72 hours to live, and she is worried about "sugar."

The milkshake was the last food or drink he took in his life. I'm damned glad he got it and enjoyed it.

Proportion, reasonableness is the key.  A hot dog is not going to make anyone fall over dead, and a spinich sandwich is not going to make anyone live to be 100. 

When I want a beer, I drink it.  It will not "make my lymphoma relapse."  I do not get drunk and am not an alcoholic, for that would indeed (gradually) damage the liver, but not cause lymphoma. 

I love the life story of Jim Fixx, the "runner's guru" from the 1970s.  He was the "health god" of the time, writing many books on "heart health." His books all had one theme: How running would give extend life.  I bought them all, and was myself a fitness zombie, running an average of 26 miles a week. 

Then, one day, the news broke: Jim Fixx was found dead, of a heart attack, while out running  !! At 52 years of age !

The irony is beyond anythng anyone could make up.

 https://en.wikipedia.org/wiki/Jim_Fixx

.

 

Simon24
Posts: 43
Joined: Oct 2015

I had just replied to GKH and then saw your post.  I loved what you had to say about the milkshake because my husband sure had a lot of them during chemo.  When other things had no taste, the milkshakes were always welcome.  He is starting to gain weight again and won't be drinking milkshakes as often, but at the time they were wonderful.  Some of the cookbooks that I borrowed from the cancer center had some great recipes for people who had lost weight and there were some good recipes for shakes. I'm sure that Gary enjoyed that last shake and so glad he got it.  The Jim Fixx story was very interesting. Living our lives in moderation with a few beers and shakes on the side sound good to me.             Simone

Simon24
Posts: 43
Joined: Oct 2015

My husband and I walked several miles a day. We eat a healthy diet and my husband doesn't even drink anything with caffeine.  He doesn't drink alcohol and hasn't smoked for over 30 years.  He has also taken supplements for years.  He has a mild case of sleep apnea, which is treated with a CPAP machine.  He did have melanoma on his back in the 90's, but the oncologist said the NHL was not related to the melanoma.  He did not receive chemo or radiation for the melanoma. He rarely has a cold, but has had Lyme disease twice.  I often wonder if Lyme disease is a trigger for immune problems, but have no research to support a link to NHL.  We asked the oncologist if there was anything he did that would cause lymphoma and the doctor told us there wasn't a known cause.  It is frustrating because now that chemo and radiation are finished we want to try to avoid anything that would trigger a relapse.  From everything that I've read on this site, there isn't a thing that he did to cause the lymphoma and there isn't anything he can do to avoid a relapse.  As I mentioned in a previous post, we have met quite a few friends and neighbors at our cancer center with a variety of different cancers and they ask the same questions we all ask.  Is there anything that I did to cause my cancer and what can I do to keep it from coming back?   I totally agree with GKH that "people with healthy lifestyles get cancer."  We plan to try continue to eat a healthy diet, keep walking, take the supplements the doctor says are O.K., keep up with all of the follow-up tests the doctor schedules, and keep praying. God has seen us through the last six months and we are so thankful for each day.

lindary's picture
lindary
Posts: 624
Joined: Mar 2015

I love the flow of this discussion.

Since I was told I was in remission as of Nov I've been pretty much back to my old eating habits. I am trying to be more active with some mild success. One thing I am reminded of is a co-worker who was diagnosed with multiple mylenoma about 15 years ago. He was a vegetarian and, as far as I know, he never smoked. He did enjoy a beer or glass of wine now and then. He fought his cancer for around 11 years and went into remission several times only to have it come back. I remember him saying, more than once, "I am living proof that being a vegetarian does not mean you won't be overweight and you can't get cancer.". 

So once in a while we have hotdogs for dinner with no guilt. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

There are those who do all the right things and strive who will be better for it and never get cancer.  

Then there's mutant cell me.  I should say I have been a vegetarian for almost thirty years, organic as many well know on this site.  Very physically fit but what I didn't tell you, I drank insane amounts of Diet Coke for years.  Never water, swore I was allergic to It.  I wonder, my father worked around chemicals.  Is there some secondary chemical effect?  We were both diagnosed within three weeks of each other?  Where I lived?  Yet hopefully no one else in my family will get it..... ???

Being a vegetarian too has it problems, before diagnosis I didn't clean them the way we all should.  There is a link to pesticides and lymphoma.  Let's not forget, to protect oneself via food we would have to eat bushels full everyday and drinks so much red wine we would be admitted into the Betty Ford CliniC and still there are no guarantee.

I have have stage IV follicular.  I'm told this is more prevalent in men, who are overweight, in there 70's and carnivores.  I have always been very thin, in my forties when diagnosised, vegetarian and very much a female.  My dad was in his late 70's (miss him so much it hurts) smoked, I never did.  Drank Beer, I drink wine, he never worked out, I was and will be again a gym rat.  He ate meat, I eat leaves.

Random indeed!

Finally I eat anything and everything I want, always have.  I quite simply prefer the foods that make me FEEL better.  I never ate to be healthy but to perform.  Food is fuel to me.  I gave up meat when I was 13 for Lent.  On Easter I recall eating meat and recalling how I felt.  The long digestive process, sluggish feeling wasn't for me.  That's the only reason I became a vegetarian.

Off my soap box for now and getting a glass of wine!  May we all have a Happy, Healty New Year.

 

 

Anonymous user (not verified)

i have a friend who has terminal lung cancer. She doesn't like diet coke but she has started eating bacon, started drinking scotch and refuses to wear a seat belt. Eat absolutely anything you want but only eat half of it. As for the seat belt well.......

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3188
Joined: May 2012

GK,

My granddad was a Kansas wheat farmer. At dinner grandma would watch us, telling us to eat the veggies first. If she walked away to get something, he alsways whispered to us, "Eat what you like, and hide the other stuff in your pocket."

I don't know why, but he outlived her by about ten years.....

 

max

Anonymous user (not verified)

and I'll bet he even ate the demon bread? You know, the stuff made from his wheat. AKA "staff of life".

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

for about a nano second I too felt a bit sassy but I'm not terminal.  Sorry for you and you friend.

Wearing the seatbelt and eating the whole darn bushel (not half)

Teobeck
Posts: 1
Joined: Jan 2018

I'm 78, recently fiagnosed with follicular lymphoma. Being treated at Emory Winship. A year prior to diagnosis I went on keto diet to lose weight, and lost 35 lbs, 214 to 179. Lost 6 inches in waist. BP went from 140/90 to 120/80. Lipids went to normal. Aches and pains disappeared. Could breathe and sleep much deeper and better. Energy went up, and mental focus increased. BMI perfect. I supplemented with fiber, magnesium, CoQ-10, vitamins D, E and B-12, and fish oil per Drs. William Davis (Wheat Belly), Permulmutter, and Mercola. Use olive oil instead of coconut oil. Only carbs come from green veggies and mixed berries. I stay hydrated.

Blood tests after biopsy and CT Scan showed everything else normal levels (kidneys, heart, lipids, liver) except lymphoma. I do not yet present with symptoms. Emory lymphoma nutritionist advised I stay on this diet as it would bode well for any chemo treatment. (At first Hematologist didn't like it, but obviously didn't understand it). Nutritionist advised that human endocrine system, digestive system, etc. continue to operate the way they were designed despite lymphoma, and that the healthier they are, the better they can function. That made sense to me.

I firmly believe that too much sugar (from carbs) combined wih too little fruits and veggies are cause of spiralling obesity, which is causing equally spiralling health problems. A healthy diet won't prevent or cure cancer, but it will help one's systems withstand it longer and better (IMHO).  

ShadyGuy's picture
ShadyGuy
Posts: 358
Joined: Jan 2017

A family member aged 50 was put on a keto diet 3 years ago to treat epilepsy. It required hospitalization to get her started. It did not work for her. Have you considered the Adkins diet? They appear very similar but Adkins is much less dangerous.

PBL
Posts: 177
Joined: Jul 2016

... what a beautiful bird picture, ShadyGuy! Is that a Green Heron?

ShadyGuy's picture
ShadyGuy
Posts: 358
Joined: Jan 2017

i am in Florida keys as we speak. I love birds of all kinds.

ShadyGuy's picture
ShadyGuy
Posts: 358
Joined: Jan 2017

erased it. Also saw giant cranes and the usual pelicans, egrets, gulls, ospreys, herons etc.

PBL
Posts: 177
Joined: Jul 2016

... wish I were in the keys myself. I too love birds. Too bad you erased the pic - glad I was able to see it while it was there, though...

Rexmax's picture
Rexmax
Posts: 42
Joined: Apr 2017

Really nothing new just wanted to say hi, still waiting on approval for a Pet Scan ( denied in Oct.) hopefully will get approved this time. Feb 1st will get 3rd Rituxan maintenance. Taste still off and saliva almost none but eating whatever I can and still maintaning my weight. I know I don't chime in much, but sure enjoy reading all your post and so grateful I found this site with you all. Have a great day all! Lillian 

PBL
Posts: 177
Joined: Jul 2016

Good to see you're gradually recovering (seems like a neverending process, doesn't it?) and still popping by from time to time!

PBL

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