Cancer - diet, lifestyle, trying to hold it together, etc

[GoVanGogh]

Please don’t quote. I will likely delete parts of OP. 
 

My DH was diagnosed with cancer last month. It came completely out of the blue. We have been married 30+ years; he has always been the super healthy one. Me? I have had every bizarre, random health issue imaginable. Him? Nothing. Ever. He urinated blood on a Thursday, called the family doctor, had an appointment that Monday and by that Friday was being expedited to a specialist when the Ct scan looking for kidney stones showed a large tumor. He had surgery a little over a week ago. Yesterday we had the post-op appointment to go over the pathology report. We are still digesting everything and don’t yet know if this is just a major detour on the way to retirement or if we have just been pushed off a cliff. DH has decided to bury his head in the sand between now and the next surgery. I get it, from his perspective. The first surgery didn’t get all of the cancer, we still don’t know the full extent of the cancer, treatment options or even if  he will be able to keep the involved organ until after the next surgery. Me, on the other hand, I need to get my ducks in a row. I have a ton of nervous energy and it is too hot to go bury my angst in the garden.

We happen to live within 30 miles of one of the best cancer centers in the states, which is where we were referred to last month. We have been very happy so far with the facility and doctors. I did ask the oncologist yesterday about diet and lifestyle and cancer and outcomes. He said “stop smoking” is the only thing that favorably affects cancer outcomes and since DH has never smoked, there is nothing he can do in that regard. I read The China Study when it first came out and just purchased the latest edition. After yesterday’s appointment, I went to a used book store and bought a couple more books on cancer and diet. But any cancer books you can recommend? I mainly eat a Whole Foods, plant based diet and it has been fantastic for my Parkinson’s. DH eats what I make him, but he also eats crap foods, like microwaved frozen meals for lunch at work. 

Caregiver books, videos, etc, you can recommend?

I need to figure out my life. I started a small business several years  ago, as a way to update my job skills, should I decide to go back to work after we finished our homeschooling journey. Along came my Parkinson’s diagnosis and going to work was put on hold. My DH doesn’t want  me to close my business, as he thinks I need the social and creative connections. I have been downsizing it for the past year, but still have a ways to go. I don’t want to make any fast decisions, just mulling it over. Financially, we are okay, but I worry about health insurance. 

[TexasProud]

I am so sorry.  I do not have any suggestions except, if you are a Christian, you might find this magazine/site/podcast helpful.  I have an article coming out soon there. 

https://www.aseasonofcaring.com/content-magazine/

I am so sorry about the diagnosis. 

[Selkie]

I thought of you and your dh the other day when I watched this interview with a radiation oncologist. Her presentation is all about nutrition for prevention and recurrence of cancer and she has all the science right there to back it up. It is so informative.

 

[mommyoffive]

I am so sorry.  I am sending lots of positive thoughts to him. 

[Kassia]

I'm sorry.  That's a lot to process and deal with all at once.  Also sending many positive thoughts.  ❤️ 

[Acorn]

Three of my close family members have/had kidney cancer. I know for two of them , they had the affected kidney removed and that was all to do other than future scans. For the other, it’s been difficult and will be a different journey. What is new for this person is the whole class of immunotherapy that has been invented. So far, the treatments have stopped the spread and shown some reductions. I wish your family all the best.

[Pawz4me]

The consensus on the cancer board I belong to (which is very, very evidenced based focused but also takes into account the realities of cancer treatment and side effects) is that in general patients should eat as healthfully as they can--lots of veggies, some fruit, limit meat, little to no processed foods. But most of the cancer diet crap you read and hear is not evidenced based. Some of it is utterly stupid. If he requires treatment then in all likelihood he will at some point or other hit a spell, perhaps for quite a long time, where you'll be happy that he ingests whatever calories he can tolerate. Don't let anyone who hasn't BTDT convince you that he must live on twigs and stems alone, or protein alone or any similar stupidity (IMHO, of course).

I'll be glad to answer any questions I can help you with, but please don't quote in case I want to delete later.

Edited June 29, 2023 by Pawz4me
edited for privacy

[knitgrl]

I am sorry. Obviously cancer has a big impact on the patient, but also spouses, who have to deal with all the emotions, changes in household duties, schedules, etc. It effects everything. One good thing is he didn't ignore symptoms, so it can be attended to now, rather than later.

I was diagnosed with breast cancer about a year ago. I had surgery, chemo, radiation, and am now taking chemo pills at home. The biggest tip I can give you at this point is how important exercise is. It increases the efficacy of treatment. It helps with fatigue. It helps to speed up recovery. I found this book helpful when I was first diagnosed: https://www.amazon.com/Moving-Through-Cancer-Strength-Training-Caregivers/dp/1797210254/ref=sr_1_1?crid=H855PZUKXJIW&keywords=moving+through+cancer&qid=1687882887&sprefix=moving+through+cancer%2Caps%2C155&sr=8-1

The cancer center I went to offered once a week exercise classes for 12 weeks. They told me as a follow-up, Livestrong sponsors exercise classes at the YMCA for cancer survivors. (FYI, anybody diagnosed with cancer is defined as a survivor.) This might be something to look into.

The cancer center also gave me a copy of this book - https://www.amazon.com/What-Eat-During-Cancer-Treatment/dp/160443256X/ref=sr_1_1?crid=X01B21Q0JEWS&keywords=what+to+eat+during+cancer+treatment+book&qid=1687883613&sprefix=what+to+eat+dur%2Caps%2C195&sr=8-1

 

 

 

 

[Pawz4me]

As far as nervous energy -- I redid the majority of the flooring in our house in the few months after DH was diagnosed. All by myself.

[knitgrl]

Yep. The nervous energy is very real.

[Kassia]

19 minutes ago, Acorn said:

. What is new for this person is the whole class of immunotherapy that has been invented. So far, the treatments have stopped the spread and shown some reductions. 

My MIL is getting fantastic results with immunotherapy (metastatic colon cancer that spread to her liver).  It's really amazing and side effects are very tolerable.

[Pawz4me]

Immunotherapy can be a game changer for those who respond to it. Unfortunately, as with all cancer medications, only a small subset of patients will respond. My DH is a non-responder.

[Arcadia]

My oncologist told my husband and I that what is most important during treatment is for me to be happy, to eat, and to do whatever exercise I can (strolling is fine too). At one time during treatment, all I could eat was ice cream and I ate mainly Alden organic chocolate fudge ice cream bars and Imuraya azuki red bean ice cream bars. I find fish oil (omega 3) helpful. 

Besides smoking, the generic advice given was to cut down on alcohol. 
https://www.cancer.gov/news-events/cancer-currents-blog/2023/cancer-alcohol-link-public-awareness

[Kassia]

1 hour ago, Pawz4me said:

Immunotherapy can be a game changer for those who respond to it. Unfortunately, as with all cancer medications, only a small subset of patients will respond. My DH is a non-responder.

I didn't know that.  I apologize if my post about MIL was insensitive and will edit it if it was.  And I'm sorry it didn't work for your DH.

[Pawz4me]

Just now, Kassia said:

I didn't know that.  I apologize if my post about MIL was insensitive and will edit it if it was.  And I'm sorry it didn't work for your DH.

Oh no, your post is fine! I just didn't want people to think that immunotherapy works for everyone. But maybe one day it will.

[sassenach]

(((Big hugs to you))) this is a hard time and hard position. It's a delicate needle to thread, being the spouse of a cancer patient.

I'm an oncology nurse (with peds, which is different but similar). Dh also had cancer many years ago. From a treatment team perspective, we always encourage families to keep things balanced and also anticipate that at some points in treatment all we care about is calories- content will be impacted by so many factors but spiraling weight loss is problematic. I second whoever said keeping strength up is important. It's shocking how quickly muscle mass can slip away and that has huge ramifications for recovery/quality of life. 

As a wife, I know there were times that my suggestions were not well-received. They were sometimes perceived as accusation (your choices are the reason you are sick/aren't getting better). This is a long road. Make sure you find your own support people who you don't have to edit around.

 

[kathyl]

7 hours ago, GoVanGogh said:

DH has decided to bury his head in the sand between now and the next surgery.

That's kinda what I did after they gave me the diagnosis.  I was looking at a radical hysterectomy, followed by chemo and radiation and all I wanted to do was just. get. through. it.   No thinking about it.  No big discussions about it.  Just put my head down (figuratively) and plow through the whole thing and be done with it.  Just to feel somewhat normal again. 

{{{Hugs}}} to you and your dh.

[Melissa in Australia]

Huge hugs

Sending positive thoughts

[Katy]

I’m so sorry.

Getting obsessive about diet might make things worse because it might be too low of calories. And one suggestion that helps some people causes the same problem- which is intermittent fasting with chemotherapy can help some people avoid chemotherapy side effects. But to get the most help you have to fast for 2-3 days before each treatment, which obviously is going to lead most people to major weight loss. Unless he has more than 60 pounds to lose it might do more harm than good. 

[kathyl]

As far as diet, I would pay attention to the cravings he has.  I know I craved specific things at different stages of the treatment and recovery process and I ate mostly those things.  I also lost my taste for things I've always loved like chocolate.  

The human body is a curious thing.  😉

[Selkie]

In the video I posted above with the oncologist, she is asked about weight loss during cancer treatment. She said that with the anti-nausea drugs that are available now, most patients don't lose weight during cancer treatment - in fact, women gain an average of 20 pounds during treatment for breast cancer. I have absolutely no experience with this myself and am just repeating what she said, but I found that really interesting.

She discusses which foods are beneficial during cancer treatment and which foods can decrease the efficacy of treatment, and she briefly touches on fasting as well.

Edited June 27, 2023 by Selkie

[TexasProud]

4 minutes ago, Selkie said:

In the video I posted above with the oncologist, she is asked about weight loss during cancer treatment. She said that with the anti-nausea drugs that are available now, most patients don't lose weight during cancer treatment - in fact, women gain an average of 20 pounds during treatment for breast cancer. I have absolutely no experience with this myself and am just repeating what she said, but I found that really interesting.

She discusses which foods are beneficial during cancer treatment and which foods can decrease the efficacy of treatment, and she briefly touches on fasting as well.

That is not what we found at all.  Mom lost weight at an alarming rate. 

[Loowit]

I am sorry you and your husband are going through this.  I remember when my husband got his cancer diagnosis several years ago.  It was so hard.  One thing I would gently suggest is to not push too much with diet changes right now.  As much as you want to be helpful, I found that I needed to let my husband lead on a lot of things like that.

Everyone and their dog when they heard about is diagnosis started to giving advice.  It all came from a place of caring, but it was not helpful.  It became overwhelming, and started to feel a bit like people were blaming him and his food choices for his cancer.  Sometimes people just get cancer through no fault of their own. His was just a super rare form of cancer that there was no amount of food, exercise, or other lifestyle choices that could have prevented it.

[Pawz4me]

41 minutes ago, Selkie said:

most patients don't lose weight during cancer treatment

I can't speak for "most," but that certainly isn't the experience of the overwhelming majority of patients on the cancer board I belong to. Her statement about anti-nausea drugs is a fairly clear indication to me of her ignorance. Nausea isn't what causes the lack of appetite for many cancer patients. Lack of appetite in and of itself is a side effect of many medications, no nausea involved. ETA: And many medications cause mouth sores, sensitivity, altered taste, and other side effects that reduce appetite or make eating difficult but for which anti-nausea medications are useless. I can't believe the lady who said that is an oncologist but doesn't seem to know any of that??

 

29 minutes ago, Loowit said:

I am sorry you and your husband are going through this.  I remember when my husband got his cancer diagnosis several years ago.  It was so hard.  One thing I would gently suggest is to not push too much with diet changes right now.  As much as you want to be helpful, I found that I needed to let my husband lead on a lot of things like that.

Everyone and their dog when they heard about is diagnosis started to giving advice.  It all came from a place of caring, but it was not helpful.  It became overwhelming, and started to feel a bit like people were blaming him and his food choices for his cancer.  Sometimes people just get cancer through no fault of their own. His was just a super rare form of cancer that there was no amount of food, exercise, or other lifestyle choices that could have prevented it.

Amen

Edited June 27, 2023 by Pawz4me

[Ginevra]

8 hours ago, GoVanGogh said:

book store and bought a couple more books on cancer and diet. But any cancer books you can recommend? I

Yes; The Metabolic Approach to Cancer, by Nasha Winters. Or, for more Woo and less overwhelming dietary strictures, Radical Remissions by Dr Kelly Hunt.
 

My friend was diagnosed a year and a half ago with a very serious, high stage cancer. She DID do all the traditional medical protocols (surgery, chemo) but she also followed The Metabolic Approach. She eats Keto and intermittent fasts. She eats absolutely not a speck of sugar. (Sugar feeds cancer.) she is not ever one to brag about “beating cancer” but her markers are very low and her inflammation is also very low. Additionally, through the diagnosis and treatment, I walked with her almost every week and I can tell you, she was the healthiest cancer patient I have ever seen. She hiked three-five miles with me every Sunday. 
 

I can tell You, her diet is absolutely radical. But her motivation was to stay alive for her kids. She also sees some alternative practitioners (mistletoe therapy, Reiki, functional medicine) and she does not discuss her diet with her regular oncologist. She does not want the push-back and it clearly seems to be doing some good, or else she’s just lucky a heck. But I believe the foods healed her. 
 

Oh, I also really love Dr William Li, who is not just cancer but all diseases. Eat to Beat Disease is a really great book. 

Edited June 27, 2023 by Ginevra

[Selkie]

Just now, Pawz4me said:

I can't speak for "most," but that certainly isn't the experience of the overwhelming majority of patients on the cancer board I belong to. Her statement about anti-nausea drugs is a fairly clear indication to me of her ignorance. Nausea isn't what causes the lack of appetite for many cancer patients. Lack of appetite in and of itself is a side effect of many medications, no nausea involved.

 

Amen

She mentioned anti-nausea drugs, but there may have been more to the explanation as well - I can’t remember.

She seems extremely knowledgeable and works with cancer patients day in and day out as her life’s work, so ignorant isn’t a word that came to mind when listening to her.🤷‍♀️

[itsheresomewhere]

For some diet can work but for others, diet is not going to help.  One of the most die hard hilarious vegans I knew died of cancer.  Sometimes genes just suck.  And I have never had anyone close to me gain weight during treatments.  Every single one lost weight. 

My DH has had cancer several times and each time they told him to eat what he wanted and felt like at the time. For you, my best advice is to take care of yourself.  Use that nervous energy to clean or learn something new. Exercise, self care ( this is so underrated I can’t say it enough) and get enough sleep.  One doctor told me to schedule a few hours a week just for me so I don’t ignore myself and take care of others.  I did find that very helpful.  

[Pawz4me]

5 minutes ago, Selkie said:

 

She seems extremely knowledgeable and works with cancer patients day in and day out as her life’s work, so ignorant isn’t a word that came to mind when listening to her.🤷‍♀️

Quack oncologists are out there, just like quacks in any other specialty. Plus all cancers are different. What is sound advice for one could be horrible for another. Every type of cancer really is a different disease. Most oncologists nowadays specialize in just a few types of cancers. Good ones will "stay in their own lane" in the same way that a dermatologist won't do a joint replacement surgery, etc. She may know nothing about the drugs (and their side effects) that are used to treat cancers she's not familiar with.

[Selkie]

4 minutes ago, Pawz4me said:

Quack oncologists are out there, just like quacks in any other specialty. Plus all cancers are different. What is sound advice for one could be horrible for another. Every type of cancer really is a different disease. Most oncologists nowadays specialize in just a few types of cancers. Good ones will "stay in their own lane" in the same way that a dermatologist won't do a joint replacement surgery, etc. She may know nothing about the drugs (and their side effects) that are used to treat cancers she's not familiar with.

Well, her presentation is chock full of the most up to date scientific studies on all kinds of cancer, so she certainly seems to have done her research. The video seems exactly like the kind of evidence-based information that OP is asking for, which is why I posted it.

[Arcadia]

51 minutes ago, Selkie said:

She said that with the anti-nausea drugs that are available now, most patients don't lose weight during cancer treatment - in fact, women gain an average of 20 pounds during treatment for breast cancer.

I lose weight during breast cancer treatment and I was under 100lbs to start with. It is not the nausea that reduced the eating because ginger snaps and ginger tea would reduce my nausea and heartburn. It is the way chemo change how food taste, making everything taste like metal or chalk which lead to having no appetite at all. 

[Pawz4me]

17 minutes ago, Ginevra said:

(Sugar feeds cancer.)

False, other than ALL cells need glucose for energy.

From Mayo Clinic: 

Quote

Fact: More research is needed to understand the relationship between sugar in the diet and cancer. All kinds of cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't make them grow faster. Likewise, depriving cancer cells of sugar doesn't make them grow more slowly.

This misconception may be based in part on a misunderstanding of positron emission tomography (PET) scans, which use a small amount of radioactive tracer — typically a form of glucose. All tissues in your body absorb some of this tracer, but tissues that are using more energy — including cancer cells — absorb greater amounts. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn't true.

There is some evidence that consuming large amounts of sugar is associated with an increased risk of certain cancers, including esophageal cancer. Eating too much sugar can also lead to weight gain and increase the risk of obesity and diabetes, which may increase the risk of cancer.

From Dana Farber Cancer Institute:

Quote

"Does sugar feed cancer?" is one of the most frequent questions we receive as oncology dietitians. While researchers continue to investigate the relationship between sugar intake and cancer, it remains a source of uncertainty and fear for many cancer patients and their caregivers.

Sugar comes in many different forms, but the simplest form is a single molecule called glucose. All cells, including cancer cells, use glucose as their primary fuel. Glucose comes from any food that contains carbohydrates including healthful foods like vegetables, fruits, whole grains and dairy. Glucose also comes from refined carbohydrates and added sugars like white breads, pasta, sweets and sweetened beverages.

The idea that sugar, or glucose, could fuel the growth of cancer cells can lead some people to unnecessarily avoid all carbohydrate containing foods. This approach assumes that if cancer cells need glucose, then cutting it out of one’s diet will stop cancer from growing. Unfortunately, it’s not that simple. All of our healthy cells need glucose to function, and there is no way for our bodies to let healthy cells have the glucose they need, but not give it to the cancer cells. Without adequate carbohydrate intake from foods we eat, our bodies will make glucose from other sources, including protein and fat. Glucose is that critical for our cells to survive and function properly. Not consuming sufficient carbohydrates can lead to the breakdown of protein stores in our body, which can contribute to muscle loss and possibly malnutrition. Following a restricted diet with very low amounts of carbohydrates can also cause unintentional weight loss. This can impact the ability to tolerate cancer treatment. Restricting carbohydrates also eliminates foods that are good sources of fiber, vitamins, minerals and immune supporting phytonutrients.

To date, there are no randomized controlled trials showing sugar causes cancer. There is, however, an indirect link between sugar and cancer. Eating a lot of high sugar foods such as cakes, cookies, and sweetened beverages can contribute to excess caloric intake. This may lead to weight gain and excess body fat. Research has shown that being overweight or obese increases the risk of 11 types of cancers including colorectal, postmenopausal breast, ovarian, and pancreatic cancer.

While it is not necessary to completely avoid sugar, reducing added sugars and consuming nutrient-dense, high fiber carbohydrates may be most effective. Here are some steps you can take to help support your overall health, promote blood glucose control, and maintain a healthy weight.

Choose whole grains like whole wheat bread, pasta, brown rice, or quinoa over refined grains like white bread, pasta and rice.
Limit added sugars. The American Heart Association recommends women should have no more than six teaspoons of sugar per day (25 grams) and men should have no more than nine teaspoons of sugar per day (37 grams).
Balance your plate. Make 50 percent of your plate high fiber vegetables and fruit. Twenty-five percent of your plate should be protein-rich foods and the other 25 percent should be whole grain carbohydrates or starchy vegetables such as peas, corn or potatoes.
Include a lean protein source with each meal and snack like skinless poultry, fish, eggs, low fat dairy, tofu, beans, nuts or seeds.
Consume a diet rich in vegetables and fruit which contain fiber, vitamins, minerals and immune supporting phytonutrients. Choose whole fruit over fruit juices and dried fruit.
Stay well hydrated. Limit sugary beverages such as juice and soda.

 

[Selkie]

10 minutes ago, Arcadia said:

I lose weight during breast cancer treatment and I was under 100lbs to start with. It is not the nausea that reduced the eating because ginger snaps and ginger tea would reduce my nausea and heartburn. It is the way chemo change how food taste, making everything taste like metal or chalk which lead to having no appetite at all. 

Experiences will of course vary from person to person, but a quick google search shows that she is correct about weight gain being common during treatment, and that the 20 pound weight gain she mentioned is correct as well.

[Ginevra]

The thing about sugar is this: there is no nutritional benefit to eating sugars and foods that cause a high insulin response. So, reducing or eliminating sugars and high glycemic index foods does not have any downside that I see. 
 

Im not an oncologist, so I’m just repeating info I have read, but while all cells use glucose preferentially, non-cancerous cells *can* use ketones, which they will do if there isn’t ready glucose waiting. My understanding is that cancerous cells do not use ketones; they require glucose because they are dis functional.  That is the logic that drives ketogenic diet as a recommendation (by some) for cancer. 
 

All I know is, based on watching my friend over the last year and a half, if I have a recurrence of cancer or a different cancer diagnosis, I’m doing what she is doing. I have already changed my diet a lot. I do not drink sugar anymore (not daily, anyway); not in coffee, not in tea. 
 

I do think it’s a hard sell to *ever* tell a cancer patient they should eat this way, but if the patient *themselves* wishes to, I do not see the downside. 
 

[Ginevra]

About weight loss: this is how I knew metastatic cancer was going to end my mom’s life. She lost such a huge amount of weight and clearly lost muscle. But she also had a major sweet tooth and, in the end, ate practically nothing but sugar. I don’t think it helped anything. 

[Pawz4me]

Just now, Ginevra said:

The thing about sugar is this: there is no nutritional benefit to eating sugars and foods that cause a high insulin response. So, reducing or eliminating sugars and high glycemic index foods does not have any downside that I see. 
 

I agree with that, except when it comes to a cancer patient needing to slow or stop weight loss (the board I belong to sings the praises of ice cream almost daily).

Quote

I do think it’s a hard sell to *ever* tell a cancer patient they should eat this way, but if the patient *themselves* wishes to, I do not see the downside. 

Ditto. Positive changes are likely always good, but they need to come from the patient. If nothing else the sense of taking back some control is helpful, I think.

[saraha]

No advice, but I am so sorry

[YaelAldrich]

7 minutes ago, Ginevra said:

About weight loss: this is how I knew metastatic cancer was going to end my mom’s life. She lost such a huge amount of weight and clearly lost muscle. But she also had a major sweet tooth and, in the end, ate practically nothing but sugar. I don’t think it helped anything. 

With both my mother (cholangiocarcinoma) and sister (breast cancer)  there was a point where NOTHING anyone other than G-d could have done to bring them longer (or better) lives. While I think my mother's vegetable based diet helped her, I encouraged her to eat that way because it made her happy.  But when she wanted sweets,  I was all about that too.  Because  she was not going to beat the cancer.  If it were an early stage or "curable " cancer,  I might find more will to push a strict diet but for my family members,  it was enjoy your life every darn day.  And that's all. 

ETA: they both lost weight at the end then filled up with ascites.

Edited June 28, 2023 by YaelAldrich

[Pawz4me]

6 minutes ago, YaelAldrich said:

 If it were an early stage or "curable " cancer,  I might find more will to push a strict diet but for my family members,  it was enjoy your life every darn day.  And that's all. 

 

That's an excellent point. There's a huge difference in an early stage, curable cancer where dietary changes certainly may help prevent a recurrence and in late stage cancers where the goal is to keep the patient going as long as treatment allows, and with as good a quality of life as possible.

[JennyD]

1 hour ago, Loowit said:

It became overwhelming, and started to feel a bit like people were blaming him and his food choices for his cancer.  Sometimes people just get cancer through no fault of their own.

I was going to post something similar.  I was diagnosed with cancer when I was 25 years old and I will never forget (nor fully forgive) the people in my life who implied that it was my fault.  Cancer is so frightening and people badly want there to be a method to its madness, but that's not how cancer -- or life! -- works.   Sometimes you just win the bad luck lottery.

I am so sorry about your DH's diagnosis, OP, and am wishing him the very best for a full recovery.  The advances in recent years are really stunning and I hope that he can benefit.

 

[kathyl]

2 hours ago, Loowit said:

I am sorry you and your husband are going through this.  I remember when my husband got his cancer diagnosis several years ago.  It was so hard.  One thing I would gently suggest is to not push too much with diet changes right now.  As much as you want to be helpful, I found that I needed to let my husband lead on a lot of things like that.

Everyone and their dog when they heard about is diagnosis started to giving advice.  It all came from a place of caring, but it was not helpful.  It became overwhelming, and started to feel a bit like people were blaming him and his food choices for his cancer.  Sometimes people just get cancer through no fault of their own. His was just a super rare form of cancer that there was no amount of food, exercise, or other lifestyle choices that could have prevented it.

Yes, that was the main reason I didn't tell anyone but my dh and my 5 younger kids about my cancer.  I didn't want to see that 'look' and hear any 'advice'.  I knew what I had to do, and I just wanted to do it and get on with my life.

I did tell my kids that they could tell a few people they knew because they weren't connected to any of our relatives or me.  And I knew those particular people would be supportive of my kids.  (college professors and friends)

I also told dh he could tell some people where he was working because I never saw those people.  But it took a while for him to understand that MY health concerns were mine to share - or not share - not dh's.  He wanted to go tell anyone and everyone.  In fact, he and one dd came out to TX while I finished radiation.  Dd helped find a rental house for us.  A few weeks later, when I got here, I was super annoyed to find that our neighbors and landlord knew about my cancer.  I had never even met them, and they said something about it and gave me that 'look'.  I knew they meant well, but it really didn't help anything.

Anyway, this is probably different for each person.  I just knew what would have happened if relatives had gotten involved, including my oldest son.  And it would not have helped anything.

Edited June 28, 2023 by kathyl

[J-rap]

(deleted for privacy)

Edited September 23, 2023 by J-rap

[Sunshine State Sue]

My gf who had ovarian cancer found the book Anticancer by David Servan-Schreiber helpful.

Hugs to you and your dh.

[PeterPan]

My father had bladder cancer, which is strongly linked from what I read to smoking. He had 2nd hand smoke exposure in the military for years when it was allowed in the mess rooms, sigh. I used a nutritionist for years who claimed she could reverse cancer with food, blah blah. I'm sure it helps, and I don't think I'd sit there and guzzle sugar. However you probably already eat a whole foods diet with plenty of fresh fruits and veges, right? And nothing he's going to do is going to change that he has to go through the treatments.

If it's more that you want to do something, I don't know, plan a trip? Organize pictures? I'd just make him his favorite meal. I hope he comes through the treatments very well. It seems like they're pretty good at treating this stuff, sigh. 

Edited June 28, 2023 by PeterPan

[popmom]

3 hours ago, Selkie said:

Experiences will of course vary from person to person, but a quick google search shows that she is correct about weight gain being common during treatment, and that the 20 pound weight gain she mentioned is correct as well.

I didn't watch the video, but steroids/corticosteroids might be part of that equation. High doses definitely correlate with weight gain.

[Kareni]

@GoVanGogh, sending all good wishes for your husband and you.

Regards,

Kareni

[Selkie]

12 hours ago, Pawz4me said:

I can't speak for "most," but that certainly isn't the experience of the overwhelming majority of patients on the cancer board I belong to. Her statement about anti-nausea drugs is a fairly clear indication to me of her ignorance. Nausea isn't what causes the lack of appetite for many cancer patients. Lack of appetite in and of itself is a side effect of many medications, no nausea involved. ETA: And many medications cause mouth sores, sensitivity, altered taste, and other side effects that reduce appetite or make eating difficult but for which anti-nausea medications are useless. I can't believe the lady who said that is an oncologist but doesn't seem to know any of that?

Here's the actual quote from Dr. Pittier after the host asks her about people losing weight during cancer treatment:

Dr. Pittier: You know, not as much as you'd think. It's not the battle days of cancer treatment. The average breast cancer patient who goes through chemo actually comes out 20 pounds heavier. We now have excellent medications to combat nausea. They get a lot of steroids. There's a lot of care to treat the side effects of the therapy. So actually it's not like it used to be where people got cancer and all of a sudden they lost 50 pounds. You still see it on occasion, but it's much rarer.

[Pawz4me]

On 6/28/2023 at 8:10 AM, Selkie said:

Here's the actual quote from Dr. Pittier after the host asks her about people losing weight during cancer treatment:

Dr. Pittier: You know, not as much as you'd think. It's not the battle days of cancer treatment. The average breast cancer patient who goes through chemo actually comes out 20 pounds heavier. We now have excellent medications to combat nausea. They get a lot of steroids. There's a lot of care to treat the side effects of the therapy. So actually it's not like it used to be where people got cancer and all of a sudden they lost 50 pounds. You still see it on occasion, but it's much rarer.

She seems to be addressing breast cancer specifically, so I assume that's her area of specialty. I can't quibble with that, I don't have much knowledge of BC at all, and I do try to be very cognizant of what I don't know and "stay in my own lane." I will defer to the BC patients and caregivers on this thread who've posted their own experiences with weight loss during treatment. They're the true experts on that.

But what she said, from what I've gathered over the past six years as a working-on-being-educated layperson, is most definitely not true of the majority of patients who have metastatic [edited for privacy] cancers. Since I live with one of those patients I do feel comfortable enough "in my lane" to express an opinion on that. The majority of them fight an almost daily battle to keep weight on. The exception to that are patients who respond to immunotherapy, which is relatively easy to tolerate as long as AI side effects don't kick in. Plus those are patients who (again, except for the lucky ones who get a durable response to immunotherapy), aren't going to "come out" of treatment until they run out of options or decide they've had all they can take of dealing with side effects and call it quits.  So it's really a whole different ball game, and why not painting with a broad brush is so very important.

Edited June 29, 2023 by Pawz4me
privacy

[knitgrl]

9 hours ago, popmom said:

I didn't watch the video, but steroids/corticosteroids might be part of that equation. High doses definitely correlate with weight gain.

Another thing I found helpful was to read up on all the possible side effects, so that I would be mentally prepared. When it turned out that I didn't have to deal with the worst of them, I was immensely grateful. The literature I read indicated that weight loss was a serious concern, but that some patients gain weight. I gained about 6lbs. I can see where weight loss might happen because chemo can mess with your sense of taste. Right after treatment, I would have what seemed like this metallic coating over my tongue for maybe a week or so. I never usually eat jello, but when I was doing chemo, I ate a lot of jello cups because they kind of overpowered that sensation, and I was too tired to fix myself anything else. Also, being too tired to do normal activities can also play into weight gain, which is why even just a 15 minute walk everyday is really important. Yes, you should eat as well as you can, but honestly, when you are being pumped full of toxins an apple a day isn't going to magically fix the immediate effects of that.

[Selkie]

10 minutes ago, Pawz4me said:

She seems to be addressing breast cancer specifically, so I assume that's her area of specialty. I can't quibble with that, I don't have much knowledge of BC at all, and I do try to be very cognizant of what I don't know and "stay in my own lane." I will defer to the BC patients and caregivers on this thread who've posted their own experiences with weight loss during treatment. They're the true experts on that.

But what she said, from what I've gathered over the past six years as a working-on-being-educated layperson, is most definitely not true of the majority of patients who have metastatic genitourinary cancers. Since I live with one of those patients I do feel comfortable enough "in my lane" to express an opinion on that. The majority of them fight an almost daily battle to keep weight on. The exception to that are patients who respond to immunotherapy, which is relatively easy to tolerate as long as AI side effects don't kick in. Plus those are patients who (again, except for the lucky ones who get a durable response to immunotherapy), aren't going to "come out" of treatment until they run out of options or decide they've had all they can take of dealing with side effects and call it quits.  So it's really a whole different ball game, and why not painting with a broad brush is so very important.

Her presentation was about all kinds of cancer, and she works with all kinds of cancer patients in her support groups, so it is not clear if her comment is specific only to breast cancer or to cancer patients in general.

I just wanted to clarify because you seemed to be eager to trash her, when she is someone who is actually trying to do good in this world and help people. She's not out there selling supplements or trying to drum up more business for her practice. She is trying to prevent cancer, and prevent recurrences in people who've already had it. She's giving people information (for free) they might not be hearing anywhere else, so that they (hopefully) don't ever have to be a patient of hers.  This world needs more people like that, so it is discouraging when the impulse of others is to tear them down.

Here is her description from the show notes:

Passionate about the treatment of cancer, and focusing on breast, gynecological and head and neck cancers, Dr. Pittier is affiliated with Tacoma Valley Radiation Centers in Tacoma, Washington. Dr. Pittier earned her Bachelor of Science degree at Occidental College, medical degree at the Trinity College followed by completing two residencies first in internal medicine then radiation oncology both at the University of Washington Medical Center. She has worked in Tacoma, WA since starting in private practice in 2009. Currently, she is the co-Chair of Franciscan Breast Center of Excellence, sits on the Cancer Committee for Virginia Mason/Franciscan Health Services, and serves as the tumor board director for multidisciplinary clinics. She implemented a survivorship clinic for cancer survivors, and remains active in community outreach programs specifically geared at preventing cancer.

[Arcadia]

20 minutes ago, knitgrl said:

Also, being too tired to do normal activities can also play into weight gain, which is why even just a 15 minute walk everyday is really important.

Dexamethasone made me hyper, as if I overdosed on Red Bull type of drinks. That also made me even more chatty during chemo than I already am. I had mild edema but not severe enough to add any significant weight. 

OP,

For me, normalcy was important. Doing the usual grocery runs, weekend window shopping, accompanying my kids to activities, so that I am not occupied with only cancer treatments. Having things to be busy about helped even if its as silly as watching a 40 episode chinese drama or watching the World Cup, UEFA matches.