Hi there Amber, I am so pleased I have been put in touch with you as I’m currently feeling at such a loss with my appetite. I began chemo in November 2019 and the cycles were every 3 weeks. For the first 2 weeks following my treatment my appetite was affected with the metallic taste and general love loss with food but by the 3rd week, just before I was due my next bout, I could enjoy my foods and looked forward to what I was going to eat. This continued to be the case until my chemo was stopped in April due to it not being as effective as my Oncologist would have liked. But since then, my appetite has gotten worse. Almost everything tastes different and if I’m honest; horrible. The metallic taste is there and seldom do I fancy a cooked meal. All of the things I loved I no longer can stomach and things that should taste of something, don’t. I have obviously lost a considerable amount of weight due to this. Some days I may only have a bowl of shreddies and maybe a plum or 2. As a man of 63, I definitely need more than this but I just can’t face it. I will often think of something I really want, but when it’s cooked or prepared and put in front of me, it usually ends in the bin. I enjoy fruit more than any other food but this still comes and goes. I don’t like meat or fish so much now and I rarely get hungry. I feel so disheartened with how my illness has affected this part of my life; it was once one of life’s little pleasures for me. I miss the social aspect that goes with eating very much, although Covid wouldn’t have allowed this much at the moment anyway. My illness is progressing (prostate that has metastasised to the bones) and I am awaiting spot radiotherapy and more chemo. I am concerned that with my weight loss, I won’t be as healthy and strong as I otherwise was in order for me to tackle this next bout of treatment. In 3 months I have lost approx 13/14 kilos. The chemo team who I see regularly for a line flush and blood test have referred me to a dietitian just this week and I’m yet to meet them. Just hoping you can impart a little advice in the mean time. Kindest regards, Steve.
Hi @mrbrn12 (Marie :))
Thank you so much for this question!
While some data on tamoxifen suggests the weight changes aren't from the drug itself, but the hormonal changes in the body while on the drug, it doesn't make the situation any less challenging.
In order to make a more clinical estimation on diet adequacy and changes, I would require more information on your food intake, sleep quality, levels of stress, and diet history to name a few. That said, would you be surprised if I said I'm not sure you're eating enough?
I completely understand the desire to lose weight. Our culture believes body size is a visual picture of someone's health and effort, but it's not.
Body weight is much more complex than we're led to believe. We're taught that if we consume less calories than we use, we should lose weight, right? For the majority of people, that theory doesn't seem to hold true. If it was true, we would have a far better statistics for long-term weight loss and maintenance than we currently have (80-95% fail rate for diets as a conservative number).
There are so many other factors that affect body weight, including (but not limited to) genetics, social and physical environment, and food access. Hormone treatments are absolutely on that list as well.
Because we don't have as much control on the outcome of our actions when it comes to weight, I would encourage you to look at factors within your control which are the behaviours. It sounds like you're already engaging in health-promoting activities and eating practices!
In general (and without knowing a more complete diet history), I recommend increasing the amount and variety of fruits and veg (if you're able), increasing the amount and variety of whole grain foods, and finding a form of joyful movement (exercise) you really love to practice consistently.
I would love to know your thoughts on this, or if you have any further questions!
Registered Dietitian | Cancer Nutrition Specialist | Online Nutrition Coach
Hi @Stephen12 ! I'm so sorry to hear how strongly your appetite has been affected! It sounds like you have some significant barriers to eating and drinking enough right now! Here are some suggestions based on the information you provided:
Complete lack of appetite - It's clear you recognize that receiving nourishment is so vital to maintaining your strength and tolerating your upcoming treatment. In this case, food is less about what sounds good and much more about self-care. Have you considered drinking your calories in the forms of high calorie/high protein shakes and smoothies? Usually, the cold doesn't taste as strongly, and drinking is easier/quicker than eating food. Sometimes, and especially with certain taste changes, having food in your mouth for any length of time can affect the gag reflex. It you've noticed that foods just feel HARD to get down or swallow them, I highly recommend focusing on liquid calorie/protein sources.
Taste changes - loss of taste/horrible taste absolutely affects your appetite! Again, I recommend trying cold foods that are easy to get down and shakes/smoothies. The less contact with the taste buds, the better. If you want foods to try, tart and tangy foods can sometimes cut through the horrible and awful taste you're having.
I've made several education videos that I've posted on my website. The information and handouts located there may be very helpful as well! There are recipes and ideas for high calorie/high protein shakes and other foods.
The videos on loss of appetite, taste changes, and fatigue may be particularly helpful. Please let me know if you have any further questions or need further guidance with recipes and foods!
I have finished chemi for breast cancer, have my operation tomorrow morning followed by radiation afterwards
I am still tired after cheno, quite fatigued so do a little and rest. I have lost muscle tone and strength the last 6 mths. Following my op and after all radiation is over how or what type of diet should I be eating.i do eat quire healthy with a balanced diet i think but I do like a few biscuits with a cup of tea a few times a day but feel guilty taking treats when I'm in such bad shape physically. I try to walk but my pace is very slow and I tire easily. Thanks for any help u can give. Regards Ruth
I wanted to welcome you to the community, I am sure Amber will be in touch soon with some helpful advice and wisdom for you.
I just wanted to wish you well for your operation tomorrow morning, I understand it may be an anxious and nervous time for you.
It sounds as if you are already trying to think ahead for when you are more up and about post treatment as to how to become fitter and stronger again. That is really great and positive. For what is is worth, please do not feel guilty about a few biscuits a day, they will not be the ruin of you. Going through chemotherapy, and the treatment that still lies ahead for you takes a tough toll on the body and mind. What you have described sounds very familiar, and I am sure others here will identify in that with you. Sometimes you have to go with the flow and find the best way through the day that you can, you still have a long road ahead, take it one day at a time, be kind to yourself.
Everyone here is very friendly, so if you feel like a chat at anytime or help with anything else, please do not hesitate to get in touch.
Thinking of you for tomorrow,
Hi @RUTHDUIGNAN ! Thank you so much for your thoughtful question. I agree with @LouiseJ and hope I can expand on the subject a bit to provide some clarity and guidance.
First, the experiences you describe from chemo sound very familiar; fatigue, loss of strength and muscle tone. If you had ups and downs to your appetite and treatment affected your ability to eat well (by that, I mean enough in general and not necessarily the type of food), that plays a role in the changes you experienced in your body.
While I support your goal to look forward and ask about eating after surgery and radiation, I want to make sure you can support and care for your here-and-now body as well.
For some, appetite drops after surgery. Having a plan on eating enough total food and eating high protein foods at meals can help you heal and recover. Do you currently have easy-to-eat foods at home or the help of friends and/or family to shop and make meals? Some people find that small meals 4 times daily can help.
You mentioned enjoying a few bisquits and tea a few times daily. I highly encourage you to continue this practice. It sounds like a routine you enjoy and that enjoyment/something to look forward to is important for your mental health. Plus, when we try to avoid or limit foods, we tend to think about them constantly, then "give in" and feel bad when we eat them.
I completely understand the hesitation to enjoy treats, but allow me to reframe and provide a different perspective. The bisquits you enjoy provide your body energy. Right now, your body needs food to to support its energy needs. Your body doesn't understand the guilt we place on our food choices. Plus, that guilt really gets in the way of fully enjoying the experience.
In order to support the body and honoring both the physical and mental needs, those bisquits fit into your eating plan. Now, it's possible they don't contain much protein. What if you also enjoyed some higher protein foods with the bisquits to make it a mini-meal? Foods that come to mind include cheese, hard-boiled eggs, nut butters, etc.
It can also be helpful to recognize and embrace your lower energy levels. What type of foods do you enjoy that require less preparation? Foods that are easy to chew? It's amazing how tiring the act of chewing can be with full body fatigue.
I have some education videos on my website you may find helpful, especially the last one dealing with fatigue. There are handouts there as well you can download for other calorie and protein foods.
I hope this helps! Best wishes and a speedy recovery for surgery!
Thank you so much Amber. Your advice is very helpful. I do have my hubby at home so meal prep is not a problem thankfully. Kind regards Ruth
My pleasure, @RUTHDUIGNAN !
I have MDS and was wondering how I can improve my diet, as I currently don’t think it’s well balanced. Can you let me know what I should and shouldn’t be eating
Hi @Londoner56 ! Thank you so much for your question!
Could you provide me a little bit more information about your eating patterns? Why you feel they aren't well balanced?
Official research organizations recommend eating more fruits, vegetables, and whole grains while limiting the amounts of red meat (beef, pork, lamb/mutton) to no more than 16 ounces per week. Some organizations recommend limiting processed meats (bacon/rashers, sausage, etc) as well.
I encourage you to see these recommendations as guidelines and resist the need for an all-or-none approach. By that, I mean you don't need to eat ONLY fruits, vegetables, and whole grains while completely avoiding red and processed meats. Balance includes both foods that promote nourishment to the body while also including foods that promote enjoyment and support mental health.
I look forward to your response so I can guide you further!
Thank you so much for being here. It's great to have someone to talk to and get credible information from.
I'm asking on behalf of a friend of mine. She's just been diagnosed with ovarian cancer, luckily got caught early, but she is devastated. We don't know what treatment she will receive just yet.
I appreciate you might not be able to give specific advice at this point, but I'd like to know if there's anything I can do to help her, eating / food-wise, any easy, nutritious recipes or vitamins, food items etc would be much appreciated.
I had a look around different websites and lots recommend smoothies / soups, but she's not very good in the kitchen. We live together and I'd love to help her in any way I can.
Thank you very much, any guidance would be amazing.
I just wanted to say welcome to the community, I am so sorry to hear about your friend's diagnosis.
I am sure Amber will be in touch as soon as she is able.
It is so thoughtful of you to try and find ways to support her in what ever way possible. I am sure she and you are in complete shock at the diagnosis, it always is a bombshell, and very difficult to come to terms with especially in the early days. As soon as your friend has been given a treatment plan and timeline of events it will be easier to plan ways of helping and supporting her through it.
The community is full of very friendly people, so if you want to ask questions about anything your friend might have to go through, please do not hesitate to get in touch.
Thinking of you and your friend, chat soon,
Hi Soph! Thank you so much for this thoughtful question!
You're correct in that I can provide more specific information when you and your friend are aware of her treatment plan. In the meantime, allow me to provide some guidance around what she may be feeling with regard to eating and diet.
It's very common to feel like changing EVERYTHING about the diet is the first course of action, but that can be so overwhelming (and unnecessary). Here are some points I'd encourage you and your friend to consider:
I hope this information helps! Please don't hesitate to reach out again and ask any follow up questions, or come back around when treatment has begun!
Hello Amber, I was diagnosed with breast cancer in February and had two consecutive surgery in April and May (the margins were not clean after the 1st one). All in all the very small (7mm) tumor was removed with a huge margin (3 cm!) and then the remaining DCIS was removed during the 2nd surgery. After all this I refused radiotherapy and started on Tamoxifen 10 mg/day, only beginning of August. The biological characteristics of my tumor are very good (100 % ER/PR +, HER2-, Ki-67<2%). I know I am now taking a risk with this treatment approach and would like to do my best and use effective supportive therapy to reduce the risk of relapse. On my own initiative I am now taking an anti-oxidant complex, another one aiming to improve immunity, alkylglycerols, black cohosh (+5-HTP, 5 micrograms Vit D3, Vit B6, acid folique, Vit B12) and Taurine. Could you please advise whether this is OK or any of these may interfere with Tamoxifen (via CYP2D6)? What would be your recommendation with regards to diet and dietary complements? I have reduced sugar but find difficult to follow keto diet. I also wanted to take high dose Vit D but my oncologist did not want to prescribe...Any advise would be most welcome!
Hi @Ewez ! Thank you for your thoughful question!
I'll start first by addressing the possible interactions between Tamoxifen and the dietary/herbal supplements you are taking. The ones mentioned below indicates there is an interaction of sorts, and would not be recommended.
anti-oxidant complex - it depends on what compounds are part of this complex, but I would recommend caution with products like this. There is a theoretical risk that supplement forms of antioxidants may offer protection for all cells, including cancer cells. There is also a chance that vitamin E (usually contained in antioxidant products) could increase the metabolizm of drugs processed with the CYP3A4. I'll address my recommendations about antioxidant below in the diet/nutrition portions.
immunity complex - it depends on what compounds are in this product.
black cohosh - this herb may increase the amounts of Tamoxifen you receive, as some clinical research suggests black cohosh may inhibit the CYP2D6 enzyme. I would recommend against using this herbal product for this reason.
high dose vitamin D - I agree with your oncologist and advise against high doses of vitamin D (depending on your bloodwork and what you consider a "high dose"). There are some studies that indicate vitamin D may affect drugs metabolized by CYP3A4, which includes Tamoxifen. That doesn't mean you shouldn't take ANY vitamin D, but be cautious about taking more than you need to.
Overall, I don't recommend herbal compounds as a support to your primary form of treatment (Tamoxifen). Other products, like an appropriate amount of vitamin D, may be necessary and provide support.
Now onto the diet/nutrition portion of your question :)
First off, I do not recommend the keto diet for any cancer patient/survivor (with the possible exception of those with primary brain tumours, not mets brain tumors). Not only is the diet very limiting in foods offered and is very difficult to follow, key foods are not allowed! In addition, there really isn't human evidence that the diet is helpful to reduce cancer recurrence (or prevention for that matter). We speculate that it could based on lab studies and animal studies, but neither of those translate to actual information on humans.
While nutrition science and studies have their limitations, we have population-based observation studies that suggest eating more plant products may be helpful. So eating more fruits and veg, along with whole grains, nuts/seeds, pulses, etc may support your body. This also does not mean you must ONLY eat fruits/veg and plant products, but focus on increasing the amounts and varieties you consume.
I am a big believer in an all-foods-fit approach to nutrition and nourishing our bodies, especially after a cancer diagnosis where many people feel they have to eat "perfectly" to reduce risk of recurrence. Allowing all foods, including sweets/desserts, paying attention to the enjoyment/satisfaction you get from these foods, and also recognizing how foods make you feel, can provide some really useful information. Here is a blog I wrote on sugar and cancer.
In general, I recommend the following for breast cancer survivors (barring any difficulty or changes in digestion):
I hope this information helps! Please let me know if you have further questions! I'm happy to help :)
Hi Amber. I have finished chemotherapy with a positive effect. Am now having immunotherapy on a two monthly basis. I have been taking multivitamins to boost my immunity. I have been advised that Biotin is very good to boost hair growth. My question is, would it be alright to take both, bearing in mind I am also on medication for hypertension. I have some hair and it is very thin so would like to boost its growth. Your advice would be appreciated. Thank you.
Hi @Frankie1 ! Thank you for this question!
Based on the information I'm able to pull from my Natural Medicines Database, there aren't any known or documented interactions between biotin and some of the common medications used for hypertension, and no interactions show between biotin and a sampling of immunotherapy drugs used in cancer treatment.
I'd be curious to know which immunotherapy drug you're taking, and also what type of multivitamin. If you're appetite is good and you aren't limited in the types of foods you can eat, you may not need to take a full multivitamin, either!
There was an interesting study done a while back (in 1998) that looked at massaging essential oils onto the scalp daily as a form of treatment and showed positive effect. The essential oils used were thyme, rosemary, lavendar, and cedarwood mixed into a combination of jojoba and grapeseed oil. Of note, this study was done with individuals who have alopecia areata, an autoimmune skin disorder, and not on individuals with hair loss from chemotherapy. I've included a link to that study for your review.
If you can further share your immunotherapy drug's name and what type of multivitamin you're taking, I can further evaluate that information.
I hope this helps!
Thank you Amber for your helpful comments. The immunotherapy drug is Obinutuzumab and I am taking Sanatogen A-Z vitamin, one a day. I do have a good appetite and try to eat healthy. I am hoping that my hair will thicken up in time, just thought I would try and speed it up a bit. I thought perhaps the multivitamin would boost my immune system. Thank you again for your help. Frankie1
Hi @Frankie1 ! It's my pleasure :) And thank you for the clarifying and follow up information.
There are no reported interactions between your specific immunotherapy drug and biotin.
Unfortunately, there's really no clinical evidence that you can increase or boost the function of your immune system with a multivitamin. If you feel you're eating enough, have good physical energy levels, and usually eat a variety of foods including fruits and veg with loads of color, you likely don't need the multivitamin.
The only addition I would suggest is speaking with your medical team about a blood test to check your vitamin D status, and add that supplement if needed.
Thank you Amber. I will definitely speak to my GP about Vitamin D. I recently had a blood test at the surgery so they can check it out. Kind regards, Franke 1
Hi there. Im due to start Radiation in September and was wondering if this treatment will have any effects on my diet or weight. I know i will be required to drink min 2 litres of water a day but is there anything I sh be avoiding or eating. Many thanks Ruth
Hi @RUTHDUIGNAN !
You will have radiation to the chest area, correct?
In my experience, radiation to the chest has fairly low side effects as far as limiting what you can eat and drink. Most people experienced some fatigue, but nothing worse than you experienced from chemo.
If your esophagus is in the treatment field (receive some of the radiation dose), you may start to notice some reflux/irritation in your mid-chest when eating or drinking around 2-3 weeks into treatment. It tends to subside about 2-3 weeks after radiation treatment ends as well. If that's something you experience, avoiding spicy, tart, citrus, or acidic foods may help.
I've included a handout on throat irritation if that becomes a concern. Otherwise, continue to eat enough total food, and focus on protein at each meal to help you heal.
Please let me know if you have further questions!
I have stage 4 primary colectoral cancer with liver metastasses. I am on cycle 7 of FOLFOX and Avastin. I also suffer from arthritis and gout limiting my food choice as I try to keep purine level low. I have metallic tastes with many foods and the metal taste seems to increase and decrease during cycles. I am experimenting with may different foods and trying desperately to find a list of ingredients/foods that will not cause metallic taste
I read online that Umami rich foods that contain glutamate will not cause metallic tastes eg miso, tomatoes, seaweed, etc. I have tried and had some success.
is this true about Umami? Are there other lists of ingredients/food I should look at?
Hi @tigger2 ! Thanks so much for your thoughtful question.
You are absolutely on the right track! That umami flavor, a deeply rich and usually savory flavor, can help with the metallic taste. In addition to umami, sweet and sour combinations may help. If you experience mouth sores on any level, the sour foods may not be tolerated.I've listed some items to try (many of which you've named), along with a side note if it may be an issue with purine levels:
In addition to these food items, consider rinsing your mouth with a bicarbonate of soda rinse before and after you eat to help clear your mouth of offending tastes. (RECIPE: 3/4 tsp salt, 1 tsp bicarbonate of soda, dissolved in about 1 liter of warm water. Rinse a mouthful and spit out several times daily)
I hope this helps! Please let me know if you have any further questions.
Thank you Amber. Yes sweet and sour has also been successful. Regards
I began treatment for cancer, base if tongue in April. In June I was 100% relying on my gtube. Recently I had to change my formula due to the cost of the plant based. This week I am severely constipated. I need to go but I can’t except small bits and it’s painful when I try. I have used senecal, and fleet suppositories but no luck. I have a fleet enema but I am nervous to try. Any suggestions?
Hi, I’ve had mastectomy in Jan and full lymph node clearance 2 weeks ago. I’ve had 6 cycles of chemo. Still have more to go once healed enough.
my weight has ballooned, for a few months I’ve been telling the nurses about my weight concerns but they all dismiss me.
2 years ago I was 11 stone and 4ft 11, in a size 10.
im now 16 stone wearing a size 22. I hate myself and I need help. I don’t know how to do it anymore. I’ve done slimming world before and I know how to loose weight but I cannot bring myself to starts, it’s like so don’t have the motivation.
I don’t know what to do anymore, please help me.
Hi @Terolyn ! I'm so sorry to hear about the constipation. That can be so very uncomfortable!
There are many variables here we can discuss to see how to minimize the risk of this happening in the future, but for now, let's see if some of these suggestions help right now.
I hope you find relieve soon! Please let me know how it goes, and how I can help once the constipation is resolved!
Welcome to the forum, I am sure Amber will respond soon, but I wanted to say hi to you anyway.
I am so sorry you find yourself struggling with weight issues on top of dealing with the diagnosis of cancer and related treatment. I think it is not unusual to find weight gain occur whilst you are going through this time. I know I did, and losing it afterwards is extremely difficult. Medication, side-effects from treatment all add to the uphill struggle of trying to shift the extra weight. Seeing yourself gain weight is very depressing in itself, especially if you cannot see a way at the moment of changing that. If you are usually a fit, sporty, person, maybe just see this as a blip, concentrate on getting through treatment, focus on that. Perhaps trying to exercise a little if you feel able to. But not necessarily 'dieting'. I think you have enough to deal with.
Pre-cancer I was not into sport, my exercise came from gardening, and walking round school where I worked. But when I came through the treatment I decided to try and improve my fitness and make the most of everything. I found swimming and aqua classes, and after initially being very nervous about going, I found I loved it. It really did become a life-saver for me, helping to increase my mobility, fitness and I began losing weight. Obviously since covid19, that all went by the way, and I haven't been able to swim since February. I have tried to exercise with Joe Wicks but I suffer with pain in my feet, bones and joints etc. which makes weight-bearing exercise very difficult. I am hoping to return to the pool soon as it opens up more. I know I have gained weight, but not by eating more, just less exercise. Very frustrating.
I intend to follow a weight-loss program, the other one (I find it works better for me), as well as return to swimming. Hopefully soon, in time, you will find the inspiration and motivation to take it up. One thing at a time.
You are not alone in this, I am sure there are many others who feel in a similar position, I hope they will reach out too.
Hi @Jee_woz ! I'm so sorry you're experiencing such intense pain around the changes in your body. Please know that you're not alone.
I would love to get a clearer picture of what you've experienced and clarify some of the details.
From your post, it sounds like you've experienced this increase in weight since the start of chemo? Has the way you've eaten or your movement practice (exercise) changed much since you've started treatment?
I ask these questions because:
These may be some ways to explain the weight changes you've experienced, but I understand that it may not really help how you feel about yourself. The following information may just begin to scratch the surface, but I encourage you to think about the questions and information provided here.
It's likely these questions don't feel all that helpful right now, as I'm not giving you guidelines to lose weight. Research tells us that 80-95% of all diets and attempts at long-term weight loss fail. It's not YOU that fails, it's the diet. The restriction. Eating and not being satisfied both physically and mentally.
Please let me know what sort of questions you have about what I've said here. 💜
If you'd like to know more, please email [email protected] with any questions or suggestions