Free to Breathe

Newbie Here

Diagnosis of NSCLC on October 11, 2017 staged at 2a. Had bilobectomy via thoracotomy on November 22, 2017. Dr stated that there was no evidence of disease present, I decided to go with chemo anyway. 4 rounds, Alimta and Cisplatin for 3 weeks. First round of chemo was terrible, everything tastes disgusting, need some suggestions please. I’ve read that the more bland the better but I need some flavor.

Also, anyone recovering from thoracotomy and have strange pains in the colon area? I asked my Dr and he said sometimes it takes a while for everything to function correctly again.

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Hi Yogamama, I am guessing part of the problem is that foods tend to have a metallic taste. The platin drugs cause this. Forget silverware and start using plastic tableware. Trust me, it helps. Secondly, for quite a while, I lived on puddings, jello, milkshakes, malts and soft scrambled eggs, or omelets. I also want to add that I believe you were very wise to go through the chemo. Stage 3A/3B survivor getting on with my life, judg69.

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Thanks for your reply. I’ll take any advice I can get😊

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I also had 2 lobes on my right removed. I did chemo and radiation prior to surgery as one small tumor had grown behind my bronchi tube and they were unable to operate unless that shrunk or better yet disappeared. Thankfully it did and surgery was an option. I have had NED since then which was 9-2016. I have scans every 6 months and feel blessed. I had a lot of issues with using bathroom but no pain there that I can recall. I wish you all the best and know that soon all your body will catch up following your surgery.

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Cisplatin dies taste awful. It’s metal based but the good news is it’s very strong and toxic and if any cells are lingering it will kill them. I was stage 3b and had 16 rounds of cisplatin every Friday it was no party but I’m here 10 years later. Try rice with butter and lots of salt and pepper. I think salt works better than sugar but I did eventually eat regular food even sushi - I’m surprised the first treatment was so bad. Chemo is cumulative so you should have been fine. Which begs the question is anything else going on. Did you tell your chemo nurse or oncologist? It’s not normal to have such a severe reaction after one treatment. It also should be ok until the 3rd day after the infusion - then you will hit that wall of fatigue nausau and metal taste - please talk to your oncologist. Something is not right. You might be allergic or just having a reaction. Good luck

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I have just started chemo (01/05/18) and the time frame you’ve given is spot on. I had to call the oncologist and get different medications for nausea, hopefully they will help me.

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Yes that is way too soon for you to be having any kind of reaction

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Welcome Yogamama72! So glad to have you join our community. I private-messaged you a link, but you will get great hints from the folks here - they know the routine inside out and upside down!

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I did six rounds of carboplatin and Alimta, then stayed on Alimta for over two years after that. The way food tastes was often a problem, especially the week following my infusion. I found that experimentation was key and, for me, one of the biggest issues was that everything tasted bitter. There is no shame in wanting flavor -- and getting something palatable can sometimes be tricky. I went for strong flavors that did not also make me nauseous to smell. I spent a lot of time experimenting in the kitchen. I ate healthy, but also was willing to eat things I might normally skip just to get the calories and a sense of fullness.

Here are a few thoughts on the subject:

lungcancer.net/living/meal-...

justbadforyou.com/blog/lets...

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Yogamama, WELCOME! You will find we are very supportive and a great source of information. I have had 5 primary cancers, and chemo is not a nice thing by any stretch of the imagination. However, you were wise to choose to go through it because it will hopefully kill any rogue cells. The metallic taste stinks, but it is temporary and think about the goal of making sure you stay NED! I used plastic utensils and did as much cooking in my crockpot as possible to avoid adding any metal taste. Try eating new foods that have stronger natural flavors. I lived on a lot of different flavors of yogurt. Also ground any spices I used as much as possible. Do you like garlic? It is very healthy and I used it a lot on things like mashed potatoes. Over-roasted meats in the crockpot with a lot of broth so that they would be extra soft, and used a lot of gravy as a spice. Keep in mind that this is temporary, and food will taste great again soon!

Also Wegman's has just come out with pureed veggies, as has Oprah. Wish they were available when I needed them!!

Lauri-Anne

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Lots of good advice already. I’m wondering if you’re a super taster (name for person with more than average number of tastebuds). Each of us responds different but I am with you. I want flavor In my food. It’s practically a quality of life requirement.

There are a number of spices with antioxidant properties and you might want to look into using them. Turmeric, garlic and rosemary come to mind. Since the scent of spices stimulates appetite and makes food more appealing use what you love as long as you can tolerate it.

I loved smoothies, ice cream, garlicy or regular mashed potatoes, bacon, toaster waffles, bean soup, pea soup, hot dogs, cheese crackers, deviled eggs and omelettes.

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I’ve definitely always had a heightened sense of taste and smell, thanks for your input 😊

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Lol super taster ? I never heard that one - hope you are well my very special worrior❤️❤️❤️

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Me neither until I saw something on The Doctors last week. Apparently there are some people born with heightened sense of taste. Somethings about the number of spongiform pupillea on the tongue. Here’s the Wiki:

en.m.wikipedia.org/wiki/Sup...

It always makes me happy to see your name come up.

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Lol yeah I’m a bad penny always showing up 😘😘😘😘😘

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I felt awful after the first round too. They changed my nausea meds, was sonewhat better after that. Good for 6 months, But now I have spot on my left adrenal.

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Hi Laurie622 and welcome. Thank you for joining us. Please keep us updated, we want to know how things are going for you. I will also private message you:)

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Sending prayers Laurie622, Cancer blows😒

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Thank you. I will find out more next week, sounds like another surgery, probably more chemo.

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One potential; very helpful resource is the book "the Cancer-Fighting Kitchen" by Rebecca Katz. She provides recipes and strategies for specific side effects of cancer/treatment including appetite stimulation and dealing with taste changes. Good luck on your journey!

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Are you having regular bowel movements? The chemo can dehydrate you and cause constipation as well as any pain medication you may be getting for aftercare of surgery. This could be cause of pain in your colon. A chemo nurse warned me not to eat any favorite foods while having chemo as it would affect my ability to eat them after chemo. He was right! To this day I can not eat some foods that I ate while getting chemo without feeling nauseous :( For a long time I couldn't tolerate the smell of garlic, onions, etc. without feeling queasy. The metallic taste is from the cisplatin and that was the worst chemo and cumulative. When I couldn't eat, my go to foods were applesauce, bananas and rice. Foods that were room temp, not hot or spicy and small portions throughout the day. If you live in an area that has legalized marijuana I would recommend that for appetite stimulation. It did the trick for me. I never was able to control the nausea no matter what I tried :( Best wishes on an easy journey through chemo.

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I had upper left lobe removed July 2013. I had already had a colostomy reversal in June 2013, so I can't tell if my problems were due to the lung surgery or the colostomy surgery, but I can tell you any time I have any surgery it takes awhile for stuff to start working right. If things are moving, that's good, if not maybe a stool softener? Personally, I should have stock in Miralax (the only thing that doesn't cause me abdominal pain).

I also did the chemo, but I was only able to do half. If you are having an issue with appetite, maybe try some Boost?

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Miralax wasn’t doing anything for me, Dr recommended milk of magnesia, that’s helping some. Appetite is picking up. I have been using the protein shakes and have realized that the tart tasting foods are what I’ve been craving. Truthfully, I’m happy I’m wanting food.

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I know people who have had good results with one milk of magnesia tab and one metamucil tab a day (they do come in tablets, you just have to look around at places like Walgreens and Walmart for them). Just FYI.

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I had to take miralax and metamucel. Constipation is the worst.

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Activia yogurt really seems to regulate me during my 3 rounds of Cisplatin and Altima I’m on round 4 and since they removed the lobes on right side the mop up job for three rounds is kicking my butt, I guess cause the cancer is out... not sure but I’m fatigued beyond belief and have 2 more rounds then radiation, not sure what those side effects are but I’m going back to work, I’m sick of being a poor me in bed tired

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May I ask your age Lovey1000? Seems like we are on a similar path. I am 45.

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56 years old, stage 3a completed 6 rounds of cisplatin and Altima not I have to do 28 radiation treat,nets, I had a double lobectamy right side and 4 lymph nodes were involved in my trachea area they will radiate the area and my surgeon did remove all the lymph nodes so I guess this is to make sure I don't get a reoccurrence....they say 3a can be cured.... then why am I doing radiation after they took the damn nodes out...so confused...I keep thinking I'm going to die within 5 yets

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Hi Lovey1000, my mom has SCLC and just completed 8 rounds of chemo and had a complete response. We were in the Radiologists office and he explained to us that radiation is only offered to those who do well with Chemo and is more of an insurance policy than anything else. I appreciated his response and I think we are both looking forward to radiation now! 28 daily treatments — but hoping to keep this cancer at bay for as long as possible.

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Nice to hear

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I'm doing 28 treatments as well

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No and that’s a strange location to have pain. I’d go see an internist about that

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I’m 56

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I’m on my 1 st round of Cisplatin and Altima after my double lobectamy url and mrl then 2 more rounds 3 weeks apart then 6 weeks of radiation to help ensure no reoccurrence

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If the cisplatin is making you too sick...let the Dr know. I had to switch to carboplatin.

Pains in your colon? MAKE SURE YOU ARE NOT CONSTIPATED!!!!!

YES IT TAKES A WHILE FOR ALL SYSTEMS TO FEEL BETTER. Surgery and anesthesia have a huge effect on the body.

Good luck. One day at a time

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