Hello! My name is Summer and I have colon cancer.
Hi everyone! My name is Summer. I am 39 and a mother to twin 3 year-old girls.
I was diagnosed this weekend with stage IIIc colon cancer. CT scan of liver looks clean. Have not had PET or lung imaging yet. I had a laparotomy right partial colectomy for a cecal mass that was causing obstruction, so I am currently recovering from that. Planning imaging soon and then Folfox will begin. Seems like an emergency. How can I just be sitting here doing nothing???
I am curious about PET scans. On one hand I really want one to allow for resection of liver/lung mets if they are there and resectable. On the other hand, a PET scan apparently gives a heafty dose of radiation. I don't want to outlive this cancer only to be diagnosed with another later due to continual radiation exposure, if it's unecessary..... Any thoughts would be appreciated.
My husband is all about diet and supplements, so we've already read many posts here leading us to vit D, tagamet, celebrex, curcumin, fatty acids, and PSK. I am also going to be the craziest green tea fanatic there ever was! I am collecting my smoothie recipies to increase kale, brocolli, raspberries, blueberries, etc. Thanks already for all your previous research and wealth of knowledge that have helped us feel like there's something, anything we can do.
Planning on working and taking care of twins during Folfox. Am I crazy or is this plan okay?
Thanks for being here!
Comments
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Watch your supplements during treatment
Particularly your anti-oxidants (green tea, blueberries, etc.) Chemo and radiation kill cancer cells by oxidizing them; high levels of anti-oxidants during treatments counteract the treatments. PLEASE consult with your dr and an integrative med specialist who specializes in oncology. Memorial Sloan Kettering has an excellent website on botanicals and supplements. The last thing you want to do is minimize the affect of your treatments.
I am on high doses of vitamin D, and also take PSK, tho I started both after treatment.
As for radiation from scans; yes there is a risk, but you need to know what you are dealing with. It is a risk worth taking. However, that said, when I was first diagnosed, my dr wanted to do 3 month CT scans, and I asked if it was really necessary. We agreed on 6 month scans for the first couple of years, and then went to 1 year. Now I'm doing 18 month MRIs, with CT scans only if there is an oddity. (This year, I had a CT.)
Alice
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Welcome!
I like your handle/name.
I am so sorry that you are facing this battle, especially at such a young age and with little children.
You have made a great move joining us here. We're a wonderful bunch of people and you will fit right in.
We do get exposed to allot of radiation during our treatments, and you just have to weigh it all up and decide if its worth the risk. My liver tumour was not picked up by a CT Scan but showed up on the PET. I now have CT's have every six months. On my last visit with the Oncologist, I asked him if I culd go to 1 year CT's and he said no.
It sounds like you are geared up and ready to fight this battle on all fronts. A healthy diet is important, but its also important to have a little fun with food, and not give up all of the bad stuff.
As for working during treatment; nobody can say if it is or isn't a good idea, as you've no idea how the treatment is going to affect you perspnally. There are folks here who have breezed through FOLFOX and others (like myself) who we brought to our knees by it. You won't know until you are there. Just be aware that you may have to give up work at some point. The meds accumulate as the treatments progress, and the side effects can worsen.
Visit us often and we'll be sure to help you through.
Sue - Trubirt
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Dx Stage 4 and have had 4
Dx Stage 4 and have had 4 lung resections at Stanford along with chemo and liver and many PET scans. 9 years here and have two kids grow up and go to college.
Without the CT and PET picking up the lung nodules early, I don't know if I could have had the thoracotomies. I always viewed it as a game of whack a mole and wanted to get the stuff out by surgery if possible ASAP. This was just me and whatever path you choose, believe in it and best always.
Chip
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Welcome
Sorry to have you here for the obvious reason, but a good place to be. Helped me a ton and great people. I am Stage IIIC myself, surgery February, just finished my last of 12 chemo sessions last week
On the various scans you can check with your doctor. For me if a scan can help (including a PET scan which I had) show what may or may not be going on, as compared to a biopsy, I would lean to a scan. Not saying I want to have a ton of them, but I have had one PET scan. And I would not be oppossed to another one in a few months to see what is happening with all the little blips and bleeps they see in my lungs, liver and kidneys (got them myself, last scan showed no change since I got on this ride.)There is some info in my profile (click) where I go through the things to some extent for me during treatment. Overall, and I have said this before, I hope everyone who ever goes through FOLFOX treatment has it like I have had it, if not better. I have had overall minor more annoying versions of each symptoms. Main ones are being tired, so napping and some neuorpathy in hands and feet, which I hope dissapates. On the days I had the pump attached I limited physical things a bit, just so not to bump into things or catch the tubing (yes it happened once or twice
) So some days (for me) I probably would have been a bit off for working or twins, but for many days (often every other week) could do pretty much everything, subject to naps and not wanting to push my port too much. The effects built up over the treatment for the ones that stuck (tired and neuropathy), but as you probably have heard, and for sure will hear, everyone is different.Good luck and welcome again.
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Welcome, Summer. Love yourNewHere said:Welcome
Sorry to have you here for the obvious reason, but a good place to be. Helped me a ton and great people. I am Stage IIIC myself, surgery February, just finished my last of 12 chemo sessions last week
On the various scans you can check with your doctor. For me if a scan can help (including a PET scan which I had) show what may or may not be going on, as compared to a biopsy, I would lean to a scan. Not saying I want to have a ton of them, but I have had one PET scan. And I would not be oppossed to another one in a few months to see what is happening with all the little blips and bleeps they see in my lungs, liver and kidneys (got them myself, last scan showed no change since I got on this ride.)There is some info in my profile (click) where I go through the things to some extent for me during treatment. Overall, and I have said this before, I hope everyone who ever goes through FOLFOX treatment has it like I have had it, if not better. I have had overall minor more annoying versions of each symptoms. Main ones are being tired, so napping and some neuorpathy in hands and feet, which I hope dissapates. On the days I had the pump attached I limited physical things a bit, just so not to bump into things or catch the tubing (yes it happened once or twice
) So some days (for me) I probably would have been a bit off for working or twins, but for many days (often every other week) could do pretty much everything, subject to naps and not wanting to push my port too much. The effects built up over the treatment for the ones that stuck (tired and neuropathy), but as you probably have heard, and for sure will hear, everyone is different.Good luck and welcome again.
Welcome, Summer. Love your attitude. During treatment, I am not sure whether working or being At home with 3 yr old twins would be harder :-). I am a twin.
Yes, we do get exposed to a lot of radiation. I found in the beginning scans, etc were important; after, more negotiable.
Just want you to know you are not alone....you will find many here who have travelled a similar path.
blessings to being NEDbound.
CM
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Hi Summer
When I was dxed with stage 3 c colon cancer into 6 nodes , I did not have the option of a pet scan. In those days only the big capital city hospitals in Australia had access to pet scan. I was dxed via a scope, My gi could not get the scope past the cancer and I was scheduled for surgery whilst still asleep in recovery from the scope. They did an ultrasound of my liver as soon as I was awake and followed up with a ct scan. It showed my liver and lungs clear. I was operated on the next night and my surgeon described my tumour as frightfully aggressive and he said straight out that he expected I would die from it. I started chemo three weeks after surgery and after some preliminary problems dealing with it I eventually had 48 weekly sessions of 5fu and levamisole. Levamisole is no longer used as a chemo agent . It was banned in the US in 2001 for sometimes fatal side effects and it was thought that there were more efficient and less dangerous options available. I have had a ct scan every year for seven years following chemo . This january I reach the end of year seventeen of survival. I have had no reccurance though I have had several polyps removed during the ten colonoscopies I have had since the original. I have followed no specific diet or supplement plan though my diet has been modified due to some serious illnesses I have had since cancer. None of my current doctors except my nephrologist considers any of my problems as long term side effects of cancer or chemo. He has done three biopsies on my kidneys and none of them have provided a result for what is causing my nephrotic syndrome. I am officially dxed with an auto immune disease of unknown type and cause. I take cyclosporine twice a day every day to keep my protein loss in check . At one stage I was losing up to seven grams of protein a day thru my urine. I suffer peripheral neuropathy in both legs and left hand . I have type two diabetes from high dose prednisone for my kidneys and have osteopenia from the same cause. I take 80mg daily of targin (Oxycodone//naloxone) for pain from my back and neuropathy. I am on three monthly shots of testosterone because of very low levels. I am now sixty five ,still at work and have watched my son go from a 13 yr old to a 30 yr old man with two children of his own.
It has in no way been a perfect survival, but I have survived to see my chilsren grow up. The only way I have achieved it is to remain vigilant ,have all the scans and scopes scheduled for me and to take responsibility for my own health. I don't take anything at afce value without making sure I understant the full impact of what is being proposed. You have my best wishes for a rapid recovery and a long and healthy survival.Ron.
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blood tests
Running more cancer associated biomarkers, inflammation markers (hsCRP, ESR) and better liver panels including GGT and LDH, more frequently, has been our key to survival between dx "at least stage II" and a stage IV with lots of twists and turns on the path to long term survival with high quality of life. A good baseline of blood tests and biomarkers before chemo may be paying dividends this year, next year, 5 yrs from now. Standard blood testing (CEA, CBC, AST-ALT-ALP) was woefully inadequate for us; a more thorough battery of common tests has been the best investment we've ever made. Even though insurance may not pay for all of the tests, carefully bought as competitive packages, they are not that expensive.
Blood and tissue tests can help guide the big savers like cimetidine and personalized chemo. We've done better dropping doctors that won't support our technical requirements, where one can simply follow the biomaker's trends with varying degrees of skill and background.
Different doctors, different bloodwork and different types of chemo may allow different supplement regimens depending on the skill and experience of your consultants.
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Welcome ! Sorry it has to
Welcome ! Sorry it has to be under these circumstances. Ive got stage 4 colon cancer mets to liver . Used to be right kidney and tiny spot on lungs but now its just Liver. Colon mass has shrunk to almost nothing being on FolFox 5 modified. This regimen is great and works well with most. Theres some side effects to it....for me : Tiredness, queezy stomach, sensitive tips of fingers, drinking cold drinks is like swallowing ice , and occasionally headaches. These things are bearable . I hope you have the same wonderful outcome that ive experienced on FolFox . Will have a chemo pump to take home for 2 days following your chemo in the clinic ? I do. Dont know where you are spiritually , but invite Christ to go thru this with you ...place deep trust in him, pray all the time to him, tell him you want your earthly life to be a representative of his love toward others aned to see your twins grow up in his love. Now is the time to act in all humility and give up control of your authority over to him. He honors that when we honor him. Im praying for maximum effectiveness for your Folfox. Dave.
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Colon Cancer
Hello, I too was diagnosed with stage 3 colon cancer. I did not have any signs of it. I have had the colonoscopy, colectomy(laparoscopic colen resection sigmoid) and is on my 4th treatment of chemotherapy. I am on Folfox and oxaliplatin. On top of this I have Anemia, Hypertension and plenty of Nausea. First treatment date was 8/5/15 and last scheduled treatment day is 1/6/15.On 9/16/15 the Dr prescribed Dexanethasone(steriods) and Ondansetron for the nausea. I was fine until that Saturday when I just crashed. We decided instead of taken the meds on the Wedneday of the Chemo, we will start it on the Friday that the pump comes off. I must say that I really, really felt good those 3 days.
I had both the CT and PET scan and it was terrible on them trying to get the IPV in to get blood. My veins are so small so I am glad that I have a power port so I do not have to be stick over and over again for the chemo. I am also grateful that nothing had spreaded. I do not have to do radiation and pray that it stays that way. I hear that it really takes a toll on your body. I like you do not want to be diagnosed with cancer at a later date of returning.
I have a hard time with finding foods that I can tolerate and drink plenty of liquids as I can tolerate. It is hard to drink water after the first day of treatment, like needles sticking in my throat. My son bought me some Smart Water and it seems to work better. I will know this upcoming Wednesday. My mouth is always dry, so I was told by the doctor to try sour candy not the peppermint I was trying. Constipation is a problem too. I take a mild laxative to go it seems once a week. I do not do supplements but is trying to tolerate Mangosteen Gold juice when I can drink it. Brocolli, mashed potatoes and rice has been my friend. I try flat gingerale too.
I have been retired for a year now and really gotten bored so I have been hired as a Food Demostrator to get my mind off of what I am going though. I haven't started yet but found out 9/23/15 that I am hired for the 5-6 hrs partime so no more that 20 hrs not guarenteed. I love tasting samples at Sam's and HEB. I adopted my last set of granddaughters so it is a challenge to keep going, a mind thing the doctor said. So I am not going to give up and I think it is g good to work if you feel good, you are not crazy and your plan is okay.
I hope sharing has help you and I thank you for being there for me too!
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Welcome to the forum.retirement2014 said:Colon Cancer
Hello, I too was diagnosed with stage 3 colon cancer. I did not have any signs of it. I have had the colonoscopy, colectomy(laparoscopic colen resection sigmoid) and is on my 4th treatment of chemotherapy. I am on Folfox and oxaliplatin. On top of this I have Anemia, Hypertension and plenty of Nausea. First treatment date was 8/5/15 and last scheduled treatment day is 1/6/15.On 9/16/15 the Dr prescribed Dexanethasone(steriods) and Ondansetron for the nausea. I was fine until that Saturday when I just crashed. We decided instead of taken the meds on the Wedneday of the Chemo, we will start it on the Friday that the pump comes off. I must say that I really, really felt good those 3 days.
I had both the CT and PET scan and it was terrible on them trying to get the IPV in to get blood. My veins are so small so I am glad that I have a power port so I do not have to be stick over and over again for the chemo. I am also grateful that nothing had spreaded. I do not have to do radiation and pray that it stays that way. I hear that it really takes a toll on your body. I like you do not want to be diagnosed with cancer at a later date of returning.
I have a hard time with finding foods that I can tolerate and drink plenty of liquids as I can tolerate. It is hard to drink water after the first day of treatment, like needles sticking in my throat. My son bought me some Smart Water and it seems to work better. I will know this upcoming Wednesday. My mouth is always dry, so I was told by the doctor to try sour candy not the peppermint I was trying. Constipation is a problem too. I take a mild laxative to go it seems once a week. I do not do supplements but is trying to tolerate Mangosteen Gold juice when I can drink it. Brocolli, mashed potatoes and rice has been my friend. I try flat gingerale too.
I have been retired for a year now and really gotten bored so I have been hired as a Food Demostrator to get my mind off of what I am going though. I haven't started yet but found out 9/23/15 that I am hired for the 5-6 hrs partime so no more that 20 hrs not guarenteed. I love tasting samples at Sam's and HEB. I adopted my last set of granddaughters so it is a challenge to keep going, a mind thing the doctor said. So I am not going to give up and I think it is g good to work if you feel good, you are not crazy and your plan is okay.
I hope sharing has help you and I thank you for being there for me too!
I'm not sure if you are male or female, share if you like to but no pressure.
It would be wonderful if you started your own thread, and that way others can greet you without hijacking NEDbounds thread.
Sue - Trubrit
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crashing after chemoretirement2014 said:Colon Cancer
Hello, I too was diagnosed with stage 3 colon cancer. I did not have any signs of it. I have had the colonoscopy, colectomy(laparoscopic colen resection sigmoid) and is on my 4th treatment of chemotherapy. I am on Folfox and oxaliplatin. On top of this I have Anemia, Hypertension and plenty of Nausea. First treatment date was 8/5/15 and last scheduled treatment day is 1/6/15.On 9/16/15 the Dr prescribed Dexanethasone(steriods) and Ondansetron for the nausea. I was fine until that Saturday when I just crashed. We decided instead of taken the meds on the Wedneday of the Chemo, we will start it on the Friday that the pump comes off. I must say that I really, really felt good those 3 days.
I had both the CT and PET scan and it was terrible on them trying to get the IPV in to get blood. My veins are so small so I am glad that I have a power port so I do not have to be stick over and over again for the chemo. I am also grateful that nothing had spreaded. I do not have to do radiation and pray that it stays that way. I hear that it really takes a toll on your body. I like you do not want to be diagnosed with cancer at a later date of returning.
I have a hard time with finding foods that I can tolerate and drink plenty of liquids as I can tolerate. It is hard to drink water after the first day of treatment, like needles sticking in my throat. My son bought me some Smart Water and it seems to work better. I will know this upcoming Wednesday. My mouth is always dry, so I was told by the doctor to try sour candy not the peppermint I was trying. Constipation is a problem too. I take a mild laxative to go it seems once a week. I do not do supplements but is trying to tolerate Mangosteen Gold juice when I can drink it. Brocolli, mashed potatoes and rice has been my friend. I try flat gingerale too.
I have been retired for a year now and really gotten bored so I have been hired as a Food Demostrator to get my mind off of what I am going though. I haven't started yet but found out 9/23/15 that I am hired for the 5-6 hrs partime so no more that 20 hrs not guarenteed. I love tasting samples at Sam's and HEB. I adopted my last set of granddaughters so it is a challenge to keep going, a mind thing the doctor said. So I am not going to give up and I think it is g good to work if you feel good, you are not crazy and your plan is okay.
I hope sharing has help you and I thank you for being there for me too!
So it sounds like you had 4 treatments, or 2 rounds, until you felt really bad? Was your first treament bad with nausea, or has it progressed with each treatment session?
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Folfox 5 chemo regimen is
Folfox 5 chemo regimen is doing wonder for me with Gods guidance and will. It has really attacked the cancer in my colon and liver, big time. Even my Doctor is quite amazed and just after 7 treatments. Have another 5 to go then a followup CT Scan . I dont know the success rate with Folfox 5 but ill bet its up there . During this anxious time, humble yourself before God and talk to him like a child talks to their Parent -- be totally transparent and take in the strenght, hope, joy thru the struggle that he wants you to have.
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WorryNEDbound said:Thanks
Thanks everyone for the responses! I very much appreciate all your insight and I am so thankful for forums like this where I can learn from all of you.
Summer
Don,t worry about the future. Take it a day at a time and you maybe NED. Good luck
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Chip - Wahck a mole had beenimpactzone said:Dx Stage 4 and have had 4
Dx Stage 4 and have had 4 lung resections at Stanford along with chemo and liver and many PET scans. 9 years here and have two kids grow up and go to college.
Without the CT and PET picking up the lung nodules early, I don't know if I could have had the thoracotomies. I always viewed it as a game of whack a mole and wanted to get the stuff out by surgery if possible ASAP. This was just me and whatever path you choose, believe in it and best always.
Chip
Chip - Wahck a mole had been my favorite go to phrase to describe this cancer process! It's a perfect description!
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I am so hap3. py you found
I am so hap3. py you found this board, even though the reason is sad and crazy.
You've received a lot of good advice. But here is some more:
1. For whatever reason - the cancer switch was turned on for you. You hear all the time how healthy living people (no smoking, great diet etc) get cancer and they just can't wrap their heads around as to "why". Why doesn't matter any more. end of story. Your job is to shrink tumors, kill cancer cells, get surgery if needed.
2. Supplements - be careful, they could block the job of chemo. chemo is rough, it goes against our logic. but we have to go through the bad to get to a good outcome. That's the way it is. You must accept that.
3. If for some reason, you start to react to chemo by getting that cancer skinny skeleton thing - no amount of green tea and chia seeds will help you. You need to be sturdy to handle the chemo, I was down to 90 lbs - put on afeeding tube- eating was supposed to seave my life.....my family would be surrounding me and begging me to eat. Wish I had that now that I'm overweight LOL. But chemo can do a numer on you with appetite etc....So this is a very real issue - consider good nutrient calorie packed foods if for some reason you start dropping ,major lbs.
Best to you - put on your fihgting gloves and you will thrive!!!
Peggy - 6 year Stage 4 Survivor - 9 mets ot live, 1 to lung...I'm still here!
\
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Summer
i am 45, twin girls atSummer
i am 45, twin girls at home and was diagnosed with Stage 3b. Had resection in July at Mass General and did PET CT prior to port placement in August. PETCT seemed important to give an all clear on the liver, luckily it was all clear. I'm in my 5 thchemo today- sitting in infusion center now! I'm a teacher and working full time- thank goodness because I feel amazing. Stinging in fingers with cold is there at times but I'm working out, playing basketball, running around with my girls... NO nausea, NO fatigue...diet is healthy but not out of the ordinary - fresh fruits, veggies, limiting things like red meat and zero alcohol - figure the less strain on my liver the better.
how ever you approach this thing, keep your mind driven... Forward... Your girls will have a superhero in the house!!! Crush it.
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Hi FatherjohnFatherjohn said:Summer
i am 45, twin girls atSummer
i am 45, twin girls at home and was diagnosed with Stage 3b. Had resection in July at Mass General and did PET CT prior to port placement in August. PETCT seemed important to give an all clear on the liver, luckily it was all clear. I'm in my 5 thchemo today- sitting in infusion center now! I'm a teacher and working full time- thank goodness because I feel amazing. Stinging in fingers with cold is there at times but I'm working out, playing basketball, running around with my girls... NO nausea, NO fatigue...diet is healthy but not out of the ordinary - fresh fruits, veggies, limiting things like red meat and zero alcohol - figure the less strain on my liver the better.
how ever you approach this thing, keep your mind driven... Forward... Your girls will have a superhero in the house!!! Crush it.
Nice to meet you!
Glad to have members here in a similar stage of treatment as I am. (Also, of course, eternally grateful to everyone who's been there done that for all the advice!). I am also working through my treatment, a lot. Honestly, I am very torn. On one hand, at least so far (one treatment under my belt) I feel fine save a few days during/after treatment, so I feel like I can/should be working. On the other hand, I have many "friends" who are in cancer treatment or are survivors who quit work or reduce significantly to spend more time with family. Sometimes I feel like I should act differently. Things are different; my time might be short. But it's hard to live that way. I am the breadwinner in my family. I want to spend time with them but I'm also working for them. Maybe it's denial, but going to work and behaving as if everything is normal helps. Maybe I am just putting off dealing with feelings.
0
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