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What happens next? New Stage IV and questions

LearningAsIGo's picture
LearningAsIGo
Posts: 27
Joined: May 2018

Hello there, this is all brand new to me and I needed to reach out in hopes for some kind of understanding about the process. I just received news that sigmoid resection came back as T4aN2bM1 (to omentum) My 35 year old mind is reeling right now, first oncology appt is next week. Are there any questions to be sure and ask? How long do they usually wait to start chemotherapy after surgery? How do you prepare yourself nutritionally to do this kind of battle-I’m already thin. It’s amazing how I go from wanting to kick this cancer’s rear end one second, and the next feel so very afraid and unsure. My husband has just been a huge support, but we just have so many unknowns. Any suggestions to get yourself back to a focused, positive state of mind? Any reputable websites to educate  empower me? I know there’s a lot of questions in this post, and that I’ll have many more, and I just want to thank you ahead of time for your suggestions-I’m glad to be able to come here and reach out. 

-B

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Welcome. This is the best place to be for information and support. Our oncs have information but not everyday experience and often don't have the time to talk to us about every last thing.

Re. chemo after surgery- I believe it's 6 weeks after because the chemo inhibits healing.

Re. eating and nutrition- You may find that nausea is an issue, or you may not. Either way, eat whatever you want. This is all hard enough without denying yourself the things you crave or are able to eat. Just keep up your strength however you need to. Exercise, however, is supposed to help. Your doctor will not want you to lose weight. They need you fairly stable in your weight or they have to adjust the chemo.

Emotionally, it just takes time. The more you learn, the more empowered you'll feel. You have youth on your side so that helps a lot. Initially it's like getting hit with a brink wall but it does get easier. You can't live in a constant state of anxiety and you'll learn to cope and accept what's going on. And you'll fight it and there's a good chance you'll win or at least survive it long term.

Hugs,

Jan

LearningAsIGo's picture
LearningAsIGo
Posts: 27
Joined: May 2018

Hi there Jan,

I have read a few posts and feel like I’m really in a good place here with kindness and the helpful information that is shared. If 6 weeks until chemo starts, that has me worried about further metastasis? I’m nervous about eating any sugar, feeding the tumor cells, and working so hard to eat lots of protein-all without an appetite post-op. Any suggestions on how to gain weight safely? I‘ve been reading some about tree nuts and am trying to figure out how to incorporate those, but it might be too soon yet after surgery. I’m curious about what vitamins/supplements might benefit me? I haven’t been sleeping well, but last night had a lot of good thoughts in an “I can do this. I’ve got this!” rather than the fear that‘s filled me. I’m going to hang on to that and keep reminding myself how far medicine has come and there are options! I’m going to try to start walking more today, without overdoing it. Thank you so, so much for reaching out :)

Warmest regards,

B.

SandiaBuddy's picture
SandiaBuddy
Posts: 1006
Joined: Apr 2017

Melatonin can help with sleep and has an anticancer effect, it even helps to make chemo more effective (of course, check with you oncologist).  I take 20mg a night, pretty much the same dose used in the studies.  A glass of red wine, from my perspective, does not hurt either.  You might look at some of the posts about cimetadine (tagamet) which also has an anticancer effect, particularly in the time period around surgery. Also, vitamin D is a popular bet.  Tree nuts are good not only for their anti-cancer effect, but also the calories.  Also, take a look at adding some coffee (if it is not part of your routine already).  There are many other additional strategies you might explore, you might want to search old posts.

https://csn.cancer.org/node/310395

LearningAsIGo's picture
LearningAsIGo
Posts: 27
Joined: May 2018

What a great compilation of information. Thank you for sharing your link and suggestions-I will definitely be researching these. I’ve finally had a good night’s sleep as the surgery site continues to heal. Once again, thanks for helping to navigate this new territory. I know I’ll have more questions along the way! 

abita's picture
abita
Posts: 733
Joined: Dec 2017

I would run any supplements and vitamins by the oncologist before taking them on chemo. They know of possible bad interactions. For instance, did you know grapefruit can have a bad impact on medicines? That is a food, but still, while the advice here helps, your oncologist went through many many years of deep training and knows what can interact badly.

abita's picture
abita
Posts: 733
Joined: Dec 2017

My oncology nutrition plan suggests plant based eating as the best during chemo. This is easy for me as I was already vegan. Both my oncologist and surgeon want me to max on the protien at 90 grams a day. I eat seitan as I am allergic to soy. Potatoes and other veggies have some protein also. I had two surgeries, and found that I didn't have much of an appetite, until I would eat something, then I would realize I was starving. I also get nauseous if I don't eat, so I spend a lot of time gnashing. My nutritionist found a vegan protein drink for me that has like 20 grams for a small bottle in case I can't eat. I try not to eat too many processed foods because I want to get lots of vitamins and protein for my calories but I do have a freezer full of foods that I can pop in the microwave because the first week of chemo is a struggle, and when I was recovering from surgery, I was good for maybe 10 minutes of activity at a time. Potatoes are easy on my stomach and actually have a lot of vitamins. I bought orange juice, no pulp, for those days even washing fruit is too tiring for me so that I get my vitamin c. I am one of the lucky ones that doesn't seem to have an eating problem. In fact, I have gained weight, and the nurses and oncologist said yeah that happens, the steroid and drugs can make you very hungry. I have had a few moments of indigestion when eating too much fats at one time since my gall baldder was removed. I didn't have cancer in it, but the location meant it had to come out for my liver resection. It only happens though when I forget and eat too many fries or chips. You should see if your hospital can set you up to talk to the nutritionist as they are a valuable asset in knowing what you should eat. Mine gave me a handout that covers every possible scenario and what to eat if having issues. 

 

 

abita's picture
abita
Posts: 733
Joined: Dec 2017

oh, I don't know what the usual time is. I waited 5 weeks I think after my first surgery, but that was my misunderstanding and probably could have started sooner. After my liver resection, I had to wait 3 weeks to start chemo back. I could have waited 4 weeks, but I wanted to start as soon as possible to finish as soon as possible. 

Good luck to you. I know how difficult this is, and please understand that you will feel anxiety waiting for each test and scan results. It is so normal, even when they expect good results, you still feel anxious. 

 

LearningAsIGo's picture
LearningAsIGo
Posts: 27
Joined: May 2018

I appreciate your suggestions and sharing your experience. I did find a vegan protein powder to help me keep my nutrition up. I’m finding that my appetite is slowly improving which is a good sign! 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I started chemo about 6 or 7 weeks after surgery. The body definitely needs time to heal from surgery though the amount of time varies from person to person. Your recovery might be faster due to your age. Physical health counts (my observation). I worked on fitness before surgery.

Some people lose weight during chemo and some gain weight (I've gained about 35 pounds over almost six months of chemo).

One question: do you have an illeostomy? This can make it easier as chemo can cause diarreah and catching it a bag may be easier. The bag is a pain in many ways but it is easier in many other ways.

I eat tree nuts 4-5 days a week. As with all foods, chew thoroughly. A study has shown that nuts help prevent recurrence (an added 44% prevention but I'm not fully sure what that 44% is from).

You will likely get 5FU and Oxaliplatin. The 5FU comes in infused form where you carry a pump around with you for two days or in pill form where you take the pill, morning and evening, for two weeks and get a third week off. You may or may not have additional chemo drugs. The Oxaliplatin is pretty tough and causes most of the side-effects and seems to affect far more people. The 5FU has side effects too but there are fewer of them and more people have minimal effects compared to Oxaliplatin.

Things to think about: are you planning on working through chemo? Most people work through it (according to my oncologist) but it is debilitating for others. Some go on short-term disability or take days off work when they feel really fatigued.

You will likely need a chest port for the infusions and this is a minor surgical procedure that you'd need to schedule before starting chemo. I had mine done the week before chemo started and I was mostly awake (though not all there) for the procedure. So you will need to plan that in and at least a few days for recovery.

There's lots of other stuff related to chemo but most people do better getting it a little at a time as getting it all at once can be overwhelming. There is an incredible amount of experience on the board on chemo. Feel free to ask questions.

 

LearningAsIGo's picture
LearningAsIGo
Posts: 27
Joined: May 2018

Thank you for letting me know how your timeline looked for surgery followed by chemo. I’m glad to know they encourage you to be healed from surgery, and am doing my best to make a full recovery! I will see what the oncologist suggests next week, and start researching the different chemo options you mentioned. I imagine a port will be discussed and they will give me enough time to heal from that. It’s hard not to worry about nothing being done in this period of time with a Stage IV diagnosis with mets to the omentum...but I’m focused on the fact that we got the masses out and my body is free of that now. I do not currently have an ileostomy. Fortunately I am able to step away from work as long as necessary, but still have our child to look after, which is more of a full-time job than most. I have a lot of good support, thankfully.

AMDR
Posts: 1
Joined: May 2018

So had the surgery...and after chemo for 6 mths.  Stage at that point was 3C. Now in March told cancer is in both lungs and para-aortic lymph nodes.  Doc wants me to start chemo again.  Why?  If the 6 mths of chemo didn't keep the cancer from spreading why try more chemo?

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Your Oncologist may want you to try a different combination of drugs this time. Same happened to me. I'm currently doing 5 to 6 rounds and remain hopeful. Best wishes to you with your treatment. Never lose hope .

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Maybe a different combination will work better on your cancer, maybe the doc is hoping to shrink the tumors so that he can remove them easier.  I've heard of both in the past.  Good luck, Traci

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