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

[Pawz4me]

5 minutes ago, Selkie said:

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. 

Ahhh .  . she's a radiation oncologist. Yet another reason to look just a bit skeptically on her advice, regardless of how well intentioned it may be. I applaud her for trying to help people (truly), but a radiation oncologist is unlikely to have expertise in dealing with the side effects of grueling oral or IV cancer treatments. Those fall under the care of medical oncologists. I'm sorry you think I'm "trashing" her. I'm not, or don't mean to be. But IME truly top cancer docs aren't spending time making YouTube videos.

This is what it boils down to, I think. You seem to have a strong need to be right, mostly because what you're posting supports your preferred WOE, which (understandably) you feel very passionate about. But you seem to have no actual lived experience with cancer or with being the primary caregiver of a person with cancer. And yet you're denying the actual lived experience that those of us who are patients or caregivers are reporting right in this very thread. I don't know what to do about that. I guess we'll just have leave it to those reading to decide for themselves who is a better source of info, and who is more likely to actually know the realities of cancer care.

[Pawz4me]

12 hours ago, kathyl said:

MY health concerns were mine to share - or not share - not dh's.

This is one reason I've been reluctant to post a lot about DH's cancer. It's his journey, his story. We're together almost 24/7, but the reality is -- he's the one with cancer. I'm just his support person. Those are hugely different roles. I understand being a support person, but even though we've been at this for a good while now I don't pretend to truly know what it's like to be a person with cancer. I walk beside those shoes, but I don't walk in them. 

[Selkie]

2 minutes ago, Pawz4me said:

Ahhh .  . she's a radiation oncologist. Yet another reason to look just a bit skeptically on her advice, regardless of how well intentioned it may be. I applaud her for trying to help people (truly), but a radiation oncologist is unlikely to have expertise in dealing with the side effects of grueling oral or IV cancer treatments. Those fall under the care of medical oncologists. I'm sorry you think I'm "trashing" her. I'm not, or don't mean to be. But IME truly top cancer docs aren't spending time making YouTube videos.

This is what it boils down to, I think. You seem to have a strong need to be right, mostly because what you're posting supports your preferred WOE, which (understandably) you feel very passionate about. But you seem to have no actual lived experience with cancer or with being the primary caregiver of a person with cancer. And yet you're denying the actual lived experience that those of us who are patients or caregivers are reporting right in this very thread. I don't know what to do about that. I guess we'll just have leave it to those reading to decide for themselves who is a better source of info, and who is more likely to actually know the realities of cancer care.

Here’s how it went:

OP posted asking for help relating to diet and cancer.

I posted a video from an expert in the field that I thought would help her, especially since I know she already eats WFPB and is interested in evidence-based science. I actually thought of OP and her dh right away when I saw it, based on conversations I’ve had with her in the past.

I specifically said I do not have personal experience with cancer treatment (although I have been through it with parents and in laws). I said I was only repeating what the doctor said about weight loss, and that I found it interesting.

You then set out to prove the doctor is wrong and a quack.

At no point have I said or implied that anyone on this thread is wrong about anything, other than that you are grossly mischaracterizing the doctor in the video.

You have a history of following me around on threads and disparaging or attacking scientific information that I post. Since you’re obviously uncomfortable with that information, go ahead and block me. 

[CTVKath]

No advice but just wanted to say I'm sorry.

[Jane in NC]

Sending good health wishes to the OP and her spouse.

My husband too has been down the cancer road, namely with a cancer that statistically speaking he should never have had.

To the OP: our local "support" group of friends was priceless to both my husband and me. Lots of people will say "Let me know if you need anything." Trust me.  Many mean this.  I asked for silly things from neighbors like "Could you pick up some bananas for us the next time you are at the grocery?" to asking one of my husband's friends if he could take my car to the auto store to replace my windshield wipers.  My husband was spending long sessions at the infusion center.  Certain friends served as drivers to deliver him in the morning.  I always picked him up at end of the day (fearing nausea). These interactions with friends who drove him to the infusion center were welcome social respites for my husband.

When one of our friends was later diagnosed with pancreatic cancer, completely losing his appetite from chemo, I learned that he liked fruit muffins.  I made him fruit muffins regularly. Sometimes it's the small stuff that makes a world of difference. As I told this friend's spouse, "Learn to ask for assistance."

My husband's cancer support group was also very helpful.  Doctors know the medical drills but not necessarily the daily drills in living with what happens post treatment. Your hospital may have a cancer support group but others find online groups.

Unfortunately you will receive unsolicited advice that is less than helpful, potentially hurtful.  I tried to protect my husband from the crazy, figuring his job was to deal with treatment and recovery. 

Again, sending good health wishes.

 

[GoVanGogh]

On 6/27/2023 at 10:48 AM, Selkie said:

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.

 

Thank you so much for the video. I just finished watching it. It was powerful. Sent the link to DH, even though I was sending him texts and screenshots the whole time I was watching it. That was a good rabbit hole to go down. Thanks! 

On 6/27/2023 at 11:32 AM, Acorn said:

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.
 

Thank you for sharing this. (Why is my quote option messed up?!?! Sorry for that.)

Edited June 28, 2023 by GoVanGogh

[GoVanGogh]

On 6/27/2023 at 11:36 AM, knitgrl said:

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

 

 

 

 

Thank you so much for the links and info. Greatly appreciated. Esp about the YMCA. DH has never gone to a gym a day in his life but told me a few days ago that he is thinking about joking one. He does outside hardcore exercise, but just a single focus. 

22 hours ago, Katy said:

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. 

Thank you for that perspective. I already cook/eat Whole Foods, plant based because of my health. I don’t want to obsess over his diet, too, because I already put a lot in to mine. (Doesn’t feel like too much because we both enjoy the foods a lot.) I just don’t want myself to backslide because my diet has been so beneficial for my Parkinson’s. DH has been on board with that and enjoys it, but he is very lean and really shouldn’t lose weight during his treatment. No way does he even have 20 pounds to lose. I will need to find some balance between both of our needs. 

[wintermom]

I'm so sorry this is happening to your dh and your family. Your dh being in good health up until this point will certainly help his recovery. Prayers to you all!

[GoVanGogh]

19 hours ago, J-rap said:

Did doctors say whether it's bladder cancer or kidney cancer?  Bladder cancer can travel to a kidney and be first detected there.

My dh had bladder cancer found by happenstance (no symptoms).  It had traveled to his kidney and dh chose to have his kidney removed.  That seems pretty major but apparently it's not a big deal for the body to readjust to this.  He also had immunotherapy treatment for about 1.5 years, which targeted his exact cancer type and I guess works very well.  It's a persnickety cancer though which will keep trying to return, so he'll need to be monitored regularly for a long time.  We don't think about it too much.

Have they discussed removing a kidney?

I hope it all goes okay -- I'm sure just hearing the diagnosis can feel overwhelming.  I'm sorry you're going through this.  I hope once you get all the information it will feel less overwhelming.  The good news is that so much is being learned about cancer treatments these days, that there is a lot to be hopeful for!

I actually didn’t specify where the cancer was because I wanted to somewhat remain anonymous and was worried about this thread popping up on a search engine. But his cancer is in the bladder, not kidneys. Sorry for any confusion on that end. They are trying to save the bladder, but first round of surgery and the biopsy - it is an invasive high grade cancer. This sort of cancer has a very high rate of recurrence and will for the rest of his life be a continual issue. Many other cancer do not have this type of recurrence issue. 

[GoVanGogh]

I haven’t been able to read or respond to all of the comments yet, but will get to them tonight. 
I was worried about this post coming up on an internet search, so I was vague about the type of cancer. But - regarding diet, etc - DH cancer is invasive high grade b l a d d e r cancer, which has a very high rate of recurrence. Per his oncologist: this will forever be an issue for him from now on. 
(They were looking for kidney stones, but found the cancer below the kidneys.) 

I already follow a plant based diet for my young onset Parkinson’s, along with growing as much of my food as I can. I am not planning on putting my DH on a strict diet by any means! In my research for my own health issues, I have read considerably about cancer, lupus, inflammation, etc, because there is a lot of overlap. I would like to help my DH in any way possible so maybe his rate of recurrence rate isn’t what we are currently being told. He already eats what I make when he eats at home. He does eat his own selections for breakfast, lunch and when we eat out. I have told him I am willing to do as much or as little as he wants me to. But at the same time, I also need to keep up with my own health. My neurologist and rheumatologist have both been extremely pleased with my labs after I changed how I eat two years ago. I don’t want to revert to stress eating my way to the standard American diet. 

Edited June 28, 2023 by GoVanGogh

[Arcadia]

24 minutes ago, GoVanGogh said:

I just don’t want myself to backslide because my diet has been so beneficial for my Parkinson’s. DH has been on board with that and enjoys it, but he is very lean and really shouldn’t lose weight during his treatment. No way does he even have 20 pounds to lose. I will need to find some balance between both of our needs. 

You don’t need to change your WFPB diet if your husband never had problems with it. Just supplement whatever food your husband needs. I was entitled to a dietitian for my care team but I didn’t find her useful. My oncologist was actually better at diet advice. He is Iranian and familiar with spices and drug interactions. We asked about turmeric for cooking and he told us that is too low dose to interfere with my chemo drugs. He did said not to take turmeric supplements as the dosage is much higher.
Prior to every oncologist visit, I have a list of questions that I want to ask and my husband would help me remember all the answers because some things are not documented in visit notes by his intern. 
My oncologist said that when undergoing chemo, if I had to go to ER, I need to tell the ER staff to page him. 

[Pawz4me]

55 minutes ago, GoVanGogh said:

I already cook/eat Whole Foods, plant based because of my health. I don’t want to obsess over his diet, too, because I already put a lot in to mine. (Doesn’t feel like too much because we both enjoy the foods a lot.) I just don’t want myself to backslide because my diet has been so beneficial for my Parkinson’s. DH has been on board with that and enjoys it, but he is very lean and really shouldn’t lose weight during his treatment. No way does he even have 20 pounds to lose. I will need to find some balance between both of our needs. 

I don't think there's any reason you'd need to change your diet. If he starts losing weight and needs to deal with that then it's easy enough to buy some high calorie foods or protein shakes. Ice cream is a favorite on the cancer board I belong to because it's something that apparently most patients can get down if their mouths are sore, and most people like it. But things like nuts, seeds, nut butters, dried fruit, avocados--anything high calorie and relatively low volume that the patient can tolerate--will work for keeping weight on. The key words there are "can tolerate," of course.

I totally understand needing to balance needs, I have to deal with my own RA while supporting DH. It is a balancing act for sure. There have been many times over the years when I've known I was worsening my own health because of needing to do for him. A recurring theme on the board I belong to, mostly for caregivers but somewhat for patients, too, is "regret proofing" your life. Every caregiver and patient gets to decide what that means for them.

[kathyl]

10 hours ago, knitgrl said:

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.

I also gained weight.  Couldn't exercise, too tired to cook, etc.  And the steroids.  Oy.  I eventually just stopped the steroid pills they gave me for nausea.  They made one specific spot in the center of my chest feel so tight I thought I was having some kind of heart problem.  It went away as soon as I quit the steroids.  I still avoid steroid medications and always will.

I also get that metallic flashback taste every now and then, 4 years after treatments.  Certain cleaning chemicals and batteries (AAA, AA, C, etc.)  seem to trigger it.  That's probably because of the Cisplatin - which I had a "severe platinum allergy" to.  Bad flashbacks for that one.

Anyway, OP, I'd do what someone said upthread.  Just keep living your life, running your business, cooking the way you've always cooked, and let your dh tell you what he needs outside of that.  And it could be as simple as what Pawz said, picking up ice cream at the store for him.  There's no need for it to be a big, complicated ordeal.

Also, this is probably particularly hard for him since he was "super healthy" to begin with.  His whole life was turned upside down in an instant.  Only time can help that.  

Edited June 29, 2023 by kathyl

[BeachGal]

If you are interested, you can subscribe to specific Medscape newsletters, such as oncology, that are written in layman’s terms. They send out emails and if you’re interested in a topic, you just click on the title and it will take you to the article. The link below is a series of interviews that came out recently discussing the type of cancer your husband has. There might be something of interest to you. (I am happy to delete it if you’d like.)

https://www.medscape.com/viewarticle/970414?ecd=mkm_ret_230628_mscpmrk_onc_top-content_etid5576213&uac=428738CV&impID=5576213

I don’t follow your husband’s type of cancer specifically, but iirc, there have been some extremely promising treatments recently. I believe Medscape might have mentioned them. ?? A quick search might turn them up if you are so inclined.

Anyway, I’m sorry about his diagnosis and hope everything will go more smoothly after the second surgery.

[J-rap]

On 6/28/2023 at 4:58 PM, GoVanGogh said:

I actually didn’t specify where the cancer was because I wanted to somewhat remain anonymous and was worried about this thread popping up on a search engine. 

...

 

Edited September 23, 2023 by J-rap

[itsheresomewhere]

I think I know the type your DH has and just want to give you a positive about it. I am the driver for my dearest friend who has that type.  She was diagnosed in 2019 and is currently in remission.  She relapsed in 2020 but did this new then treatment that did wonders.  No chemo only this specialized targeted treatment for a couple for a months after a second surgery.  And she was diagnosed as they thought she had might have a kidney stone and found this instead.   

[GoVanGogh]

1 hour ago, J-rap said:

(I didn't quote it all for privacy.)  Thanks for clarifying.  It sounds similar to my dh's, which apparently has a high rate of returning too, although I can't recall if his is considered high grade or low grade.  Apparently for my dh, the most important part is to keep catching it early, because then he would receive the same immunotherapy treatments again which are consistently very effective.  (It is the BCG immunotherapy treatments, which also happens to be used in the tuberculosis vaccine!)

 

He will start the BCG treatments shortly after the next surgery. I just found out that the husband of someone I know through my business received BCG in the very early days of its use. He is doing very well today, so that is so encouraging. 
DH’s is considered high grade because the main tumor was over 3mm in size and had satellite tumors off it. It was frightening to see the size of it on the scans, compared to size of bladder. 
Thank you so much for the information. 

[GoVanGogh]

Re: changing my diet because of DH’s needs

I am more worried about stress eating and falling back to old habits. When I was going through tons of neurological testing prior to my Parkinson’s diagnosis, I got into the (very bad!) habit of going out for (gluten free) pancakes after my neuro appointments. I would actually schedule my appointments so I could go out for pancakes. I was struggling to eat anything at the time and everything made me horribly sick to my stomach. I mostly lived on toast, rice and pancakes for a year. I gained so much weight, as I couldn’t exercise like I was used to. Pancakes are still such a comfort food to me, but gluten free baked carb items are awful for me, like a gateway drug. I do, thankfully, have a really great support system. I work out with a personal trainer that is also certified in plant based nutrition and my yoga mentor that is plant based vegan. I have lost the weight I gained prior to my Parkinson’s, was able to build up from toast to growing and eating microgreens, etc. But those dang old habits! I worry they are still too close to the surface. 

[GoVanGogh]

@Jane in NC Thank you so much. I hope to message you tomorrow. I greatly appreciate your input. Best wishes to you and your husband. 

[BeachGal]

Here is what I had read. It was from Northwestern University about a drug, tazemetostat, already being used for other cancers. They think it could be helpful for even aggressive and late stage.

https://news.northwestern.edu/stories/2022/10/novel-treatment-effective-for-bladder-cancer-study-shows-in-mice/?fj=1

Quote

The drug is a pill that is well tolerated and could be added to other systemic therapies in bl*dder cancer, Meeks said.

https://classic.clinicaltrials.gov/ct2/show/NCT03854474?term=Etctn+10183&draw=2&rank=1

 

Science Daily had a number of interesting articles about new therapies as well.

(Let me know if you'd like reference to the type of cancer removed.)

[GoVanGogh]

On 6/27/2023 at 6:55 PM, Ginevra said:

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. 

Thank you so much for this information. 
re: radical diet and re: the video in debate

The thing with “radical” diet is… I have a cousin who thinks I eat a radical diet and that I am depriving myself of living a good life because of the foods I consume. Yet he is over 300 pounds and diabetic. On his favorite sports team’s first game of the season, he posted a photo of his “game day food.” He can say that my eating kale is radical, yet I can’t say that consuming a large bucket of fried chicken is radical because to him that is normal. 
 

@Selkie Thank you very much for the video. I am sorry for the discussion around it. I *do* appreciate that you posted the video. I had a chill day today and it was a good time to watch it and go down some rabbit holes. 

Edited June 29, 2023 by GoVanGogh

[popmom]

5 hours ago, GoVanGogh said:

Re: changing my diet because of DH’s needs

I am more worried about stress eating and falling back to old habits. When I was going through tons of neurological testing prior to my Parkinson’s diagnosis, I got into the (very bad!) habit of going out for (gluten free) pancakes after my neuro appointments. I would actually schedule my appointments so I could go out for pancakes. I was struggling to eat anything at the time and everything made me horribly sick to my stomach. I mostly lived on toast, rice and pancakes for a year. I gained so much weight, as I couldn’t exercise like I was used to. Pancakes are still such a comfort food to me, but gluten free baked carb items are awful for me, like a gateway drug. I do, thankfully, have a really great support system. I work out with a personal trainer that is also certified in plant based nutrition and my yoga mentor that is plant based vegan. I have lost the weight I gained prior to my Parkinson’s, was able to build up from toast to growing and eating microgreens, etc. But those dang old habits! I worry they are still too close to the surface. 

Does it have to be all or nothing?? I am empathizing with you on this. Food is comfort for me, too. I mean, I eat nutrient dense foods intentionally, but I plan for comfort foods when it’s reasonable. (I have Sjogren’s Disease)
 

I’m asking because…I don’t know…

I’ve been through eating disorders with two dds. Our counseling helped us all to be able to enjoy food as comfort—occasionally, reasonably—but this is psychological for my kids, so I’m so sorry if this is triggering or doesn’t apply to your situation. I also eat to heal, but I’m fortunate that I have some leeway. 

Edited June 29, 2023 by popmom

[Ginevra]

5 hours ago, GoVanGogh said:

The thing with “radical” diet is… I have a cousin who thinks I eat a radical diet and that I am depriving myself of living a good life because of the foods I consume. Yet he is over 300 pounds and diabetic. On his favorite sports team’s first game of the season, he posted a photo of his “game day food.” He can say that my eating kale is radical, yet I can’t say that consuming a large bucket of fried chicken is radical because to him that is normal. 

I hear you on that, for sure. My friend has gotten some pretty intense push-back at times for her “radical” diet. One couple took her and her husband out to dinner just so they could confront her about it. He said something like, “We are supposed to have pleasure in life too, don’t you think?” And she said, “The pleasure part for me is to be able to look into my daughter’s eyes and tell her I am doing everything I can to stay alive for her.” I thought that was a great response. 
 

So, let me tell you a little bit about what she does. For one thing, she has about thirty foods/beverages that she eats every week; some, daily. If she gets to the weekend and hasn’t consumed some of them, she eats them all just BOOM. Just eats them; doesn’t worry about making a meal that makes sense. Just does it. She does not consume added sugars, but she also does not consume natural sugars (this is a difference between us). At this time, she eats only things that keep the insulin response low. She does say sometimes she does not keep her macros perfectly in the Keto allowance. 
 

To @popmom I think, yes, it is true it does not have to be all or nothing. I would say this is how I eat myself. My friend is really on the far end of complete compliance, but she has a really good reason. I am so happy she was willing to do it because I truly question if she would still be alive otherwise. 
 

I would like to say more about this later but now I have to get ready for work. 🙂 

[cintinative]

OP, I didn't read all the responses, and perhaps this is not what you meant, but my friend who is a two time brain cancer survivor recommends this book (Christian content): https://www.amazon.com/When-God-Cancer-Meet-Lynn/dp/0842370153/

My husband had a partial nephrectomy years ago for kidney cancer.  A couple of guys who are cancer survivors from church met with him and talked with him about his concerns. If he has any friends who have been on this journey, they might be a helpful listening ear.  

Beyond that, I just wanted you to know I am sorry and  I will be praying. I know this sort of news unseats you. 

 

[J-rap]

On 6/28/2023 at 9:59 PM, GoVanGogh said:

He will start the BCG treatments shortly after the next surgery. I just found out that the husband of someone I know through my business received BCG in the very early days of its use. He is doing very well today, so that is so encouraging. 
DH’s is considered high grade because the main tumor was over 3mm in size and had satellite tumors off it. It was frightening to see the size of it on the scans, compared to size of bladder. 
Thank you so much for the information. 

...

 

Edited September 23, 2023 by J-rap

[Selkie]

10 hours ago, GoVanGogh said:

Re: changing my diet because of DH’s needs

I am more worried about stress eating and falling back to old habits. When I was going through tons of neurological testing prior to my Parkinson’s diagnosis, I got into the (very bad!) habit of going out for (gluten free) pancakes after my neuro appointments. I would actually schedule my appointments so I could go out for pancakes. I was struggling to eat anything at the time and everything made me horribly sick to my stomach. I mostly lived on toast, rice and pancakes for a year. I gained so much weight, as I couldn’t exercise like I was used to. Pancakes are still such a comfort food to me, but gluten free baked carb items are awful for me, like a gateway drug. I do, thankfully, have a really great support system. I work out with a personal trainer that is also certified in plant based nutrition and my yoga mentor that is plant based vegan. I have lost the weight I gained prior to my Parkinson’s, was able to build up from toast to growing and eating microgreens, etc. But those dang old habits! I worry they are still too close to the surface. 

I'm glad you have such great support. It's so important to have people in your corner who respect your healthy choices and cheer you on!

The amount of peer pressure to eat crap in this society is ridiculous. The same people who would never urge a reformed alcoholic to lighten up and have a beer, or a reformed smoker to have a cigarette, think nothing of pressuring someone who's kicked the unhealthy food addiction. It's considered radical to cut out foods that have just as much of a negative impact on health as booze or cigarettes. 

I don't know if you're ever on Dr. Fuhrman's site, but in the Nutritarian Network section, there's a woman named Emily Boller who posts regularly. She has such wise words about addictive foods and how to handle slip-ups to avoid the downward spiral. She's awesome, and I thought of her when I read your post because she has often talked about the addictive nature of baked goods. She also wrote a book called Starved to Obesity that is a great read.

[GoVanGogh]

A few updates, now two months in. 
DH had his second surgery in July and developed life threatening complications. It has made a surreal diagnosis even more so, that someone so healthy could almost die from complications before he really even got in to this awful cancer thing. (I mention that only because it pretty much clouds everything else I will say.) Thankfully, he has since recovered and has now started weekly immunotherapy infusions. They will do new scans/tests right at Thanksgiving time to see if the treatments were successful. He has an aggressive form of one of the most recurrent cancers, so this will be a lifetime of beating it back and trying to save the organ where the cancer originated. 
I have read half dozen or so books on cancer in the past two months, some really good ones that will try to come back and mention. When things seem out of control in my life, I tend to go in to deep research mode and this time has been no different. I have talked with my therapist several times about what is a healthy level of research and what isn’t, as I have a close relative that doesn’t research anything and thinks I am too obsessed with researching this. My DH and therapist think I am still in the healthy zone. 
Dr Fuhrman (mentioned in earlier post) is coming to the city where I live next month and I am so excited to attend. 
I have done way too much stress eating! But I am staying focused on my own goals - eating healthy most of the time and I have been consistent with working out. 
I was super impressed with the hospital food when DH ended up back in the hospital with complications. (I am still traumatized by the dreadful hospital food 20 years ago when my child was in NICU.)  A friend came to the hospital last month and helped me navigate the cafeteria, scoping out the gluten free vegetarian options before she pulled me out of the ER late that first night, knowing I needed to eat.  I hadn’t eaten all that day and was taking my Parkinson’s med off schedule and without food in my system and I couldn’t even focus my eyes. 
I am trying to figure out my life now. I had started a small business about six years ago. I was already downsizing it before my husband’s diagnosis but am now trying to downsize it even more. I am not sure when to go ahead and just pull the plug on it. Part of me just wants to be done with it and move on, I feel uninspired to continue on, then I feel sad about doing closing it entirely. I applied for a part time job a few weeks ago, though didn’t hear back from them. I think I do need to get a part time job because we are worried about the possibility of DH needing to take disability down the road and I feel a deep need to have some more control of my financial future. On paper, we should be okay financially, but there are too many scary unknowns. 
Sorry to ramble. I think I have turned in to my MIL in the past two months and ramble on too much. LOL 

[footballmom]

I am praying for you and your husband @GoVanGogh. Thank you for coming back to update us. You are going through so much and I am so happy you are giving yourself some margin with therapy, time to work out, and mindful food choices. I’m sure you aren’t turning into your MIL 😉 you are juggling a lot. 

[mommyoffive]

I am sending all my good thoughts and prayers to your husband.  How scary that he had complications from his surgery.  i am glad that he recovered.  I am hoping that he has the best possible outcome from his treatments.  I am glad you have support with everything going on with your health and your dh's.  

[Frances]

Sending so many good thoughts your way. You are doing an amazing job supporting your husband. I wish you both all the best.

[Condessa]

NM

Edited September 1, 2023 by Condessa

[Condessa]

NM

Sorry, I responded to the original post before reading the rest and realizing that this is up because of a recent update.

I am so glad your husband made it through that bad time, GoVanGogh, and so sorry that you had to go through that.  It's okay to ramble, and it's okay to research this thing to the extreme.  Whatever you need to do to work your way through it is alright, regardless of what others think.  

Edited September 1, 2023 by Condessa

[Scarlett]

@GoVanGogh I am just now seeing this thread.  I am so sorry.  I  must be so scary and stressful for you both.  
May I ask if they have recommended removing the bladder yet?

[Kareni]

Wishing your husband a favorable outcome after his immunotherapy treatments, @GoVanGogh. Also wishing you peace of mind as you navigate all these challenges.

Regards,

Kareni

[Melissa in Australia]

Sending positive thoughts. 

Hugs 

[Wishes]

Hope for healing for your husband and peace for you

[Hyacinth]

I think this board is a great place to ramble! We’re all privileged to read your words here. Thank you for the update. I’m praying for both of you. 

[Kassia]

Please don't feel like you're rambling.  We are all here to support you as you go through this stressful time.  Thank you for the update.  Thinking of both you and your DH.  ❤️ 

[TexasProud]

@GoVanGogh  Ramble away.  Thank you for updating us and really sorry you are on this journey..

[Pawz4me]

FWIW --

There has been at least one study that showed patients on immunotherapy who took a specific probiotic (CBM558) responded better. It's sold in Japan under the name Strong Miyarisan. The patients on my cancer board mainly source it from the CosmeBear store, although it's currently listed as out of stock. EBay and this Japanese drug store are other sources. Apparently Amazon Japan has it, too. Members say that shipping from Japan generally takes 12-14 days.

I haven't kept up with the study(ies) on it, really. DH had progression on an immunotherapy combo treatment a couple of years ago, and the current thinking for his type of cancer is that if a patient fails one or two immunotherapy drugs they're not likely to respond to any of them. So since the research on CBM558 doesn't really apply to him I haven't followed it closely, so you'd need to read up on it yourself (if you feel that would be a healthy thing for you to do, of course). But a lot of the immunotherapy patients with his type of cancer are taking it. They're usually on ipilimumab (Yervoy), nivolumab (Opdivo), or pembrolizumab (Keytruda).

Edited September 1, 2023 by Pawz4me

[Ali in OR]

I wish we had a "care" emoji. I don't want to do happy or sad at this point, but just acknowledge this is tough, but you're processing and thinking and being there for your dh. I'm sorry you have to travel this road and hope you keep finding the strength and resources each day needs.

[saraha]

Hugs @GoVanGogh for you and your dh. I’m so sorry

[TravelingChris]

I am very sorry that both of you have such diseases.  Many prayers for you.

[MercyA]

You are not rambling, but even if you were, that would be perfectly fine. 

Sending hugs to you and wishing with @Ali in OR that we had an appropriate emoji for "we care." 

[kathyl]

Thank you for the update.  And ramble away!!  It probably helps you and it may also help others here.  I learn SO much on these boards.  I love it when people ramble.  

Praying for you and your dh.

[kathyl]

It just occurred to me that maybe there is a way to put your business on 'pause', vs stopping it or continuing at full speed?  At least until you and your dh find your new 'normal'.  Then, you'll know better exactly what your life entails and you can make a more informed decision.

I've never run a business, so take this with a grain of salt.  🙂

[Corraleno]

I'm so sorry you and your DH are going through this. Sending lots of hugs and positive thoughts.

[mominco]

(((hugs)))

[Amethyst]

I’m sorry that you both are going through this. (((Hugs))) 

[mum]

I am so sorry. 

As far as diet for preventing/improving cancer outcome, other than the common sense stuff of eating well balanced diet rich in fruits and veg, minimal meat/dairy, and little to no crap, I don't think there's anything else. Of course there are thousands who would be happy to sell you a book outlining whatever their 'miracle' diet is. And of course people have recovered/entered remission/been cured and many are happily attributing it to whatever they did diet-wise, but I'm not convinced it's what the ate/didn't eat. My mother has chased health her whole life. She has eaten more healthfully than any person I have ever known or even heard of. Not a grain of sugar has passed her lips in more than 50 years. Not a single antibiotic. Every known supplement has been used/consumed, no matter how unpleasant. Every item in her house is non toxic, bought after much research. Every skin care/shampoo/soap/household cleaner is primo non toxic/free of everything, etc. And lo and behold, last year she was diagnosed with 4 different and likely significantly life shortening diseases. My dad on the other hand eats crap and is overweight and at the same age as my mother, has zero medical problems. They have lived in the same place and house for 50 years. And yet, my mother is still buying the next diet book that promises her that THIS diet (I'm not talking weight loss diet, I'm talking exclude/include x, y, z diet) will be the answer. So if I even had any faith in the 'eat right, take the right supplements' for curing this, that or the other problem, I do not have any faith now. Maybe she would have been sicker sooner if she hadn't done "all the right things." But she has spend her whole life chasing health and a small fortune on books and supplements and primo food and she is not at all happy. 

If I had cancer, I would eat clean, and do whatever the well respected oncologist that I had chosen said to do. From my own chronic illness journey, I think stress has a larger role in sickness and health than I ever knew. I would address that. And get the support that I and my family needed to walk through the situation.

All the very best to you and your husband and family.