Hi There,

I'm looking for help or advice from anyone who may have had or knows someone who may have had bowel cancer with CF. I've just been diagnosed with the cancer but can find very little information on people with CF who have suffered with it. Would greatly appreciate responses. Thank-you

I had a malignant polyp adeno ca removed (removed part of large bowel) asending colon removed. Doing great by that no additional treatment need. That was 9.5 yrs. ago. You can send me a private message if you want to talk more about it more.

Side note, if I had my colonoscopy at age 50, they would of prob. found the polyp before it turned to cancer. I had my 1st colonoscopy at age 53, only because my wife made the apt. for both of us. Hers was fine but mine was not.

Thank God for my Bride. 

Have your colonoscopy at age 50 or before with family history of colon ca!!

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I was 12 yr. old when diag. with cf (recently found out that I have Mutation DF508), now 64 yr. old ret. from hosp, worked in Nuclear Med. 35 yrs. 2004. Have wonderful wife, been married for 43 yr. we have 2 adopted children (35 yr. old now) both who have children of their own, 5 grands. Wife retired in 2011 after 41 yrs. as Radiology Technologist. God is Good!!

Every day is a good day, some just better than others. Fev1=31

I am so sorry you are dealing with this. Like cf isnt enough alone. A few years ago I was having chronic abdo pain. After lots of searching my dr sat me down and suggested we do a scope because there is a higher rosk of bowl cancer with cf. I was fortunate and it came back clear but fromthis i do believe youre not alone. Im sorry i cant be of better help. Please just know that you are not alone in your fight.

I wish you peace and strength to overcome this.

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Share my CF love story at:
livinglovinggrace.blogspot.com

Thank-you both for getting in touch. It's so inspiring to hear that you're doing great Scanboyd. I've sent a pm through, though was first time I've tried to do this so hope you received it. Glad to hear that your scope was clear living loving grace. Thanks for your supportive words, very comforting. Feel so sick, but have to keep fighting. love and best wishes of health to you both.

Steph had rectal cancer. Here is her blog. http://ifpigshadwings.blogspot.com/

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Lauren 33, G551D and DF508, 4 year old son with S1235R and G551D

Husband had colon cancer 3 yrs ago.  Tumor was size of Coke can top. After surgery he had 9 chemo treatments.  He is now doing great.  Had colonoscopy been done at age 50 as recommended they might have caught it in early stages.  As a result of his bout with cancer I scheduled colonoscopy (55 yrs-same age as he was) and unexpectedly received diagnosis of cancer too.  Had I waited 6 mos. the doctor said I would have had to have surgery and chemo too.  Husband is 58 yrs old, dx w/CF at 14 yrs; dbl transplant 1997.  Best of luck to you. 

Hey Lila. That sucks that you have cancer. Nothing life having to scary diagnosis. Like Grace said GI cancers are more common in those with CF. My diagnosis was rectal cancer. I was lucky and it was stage 1. However, I ended up with a permanent colostomy due to the location. Treatment is very much dependant on what stage of cancer you have. The National Comprehensive Cancer Network sets treatment guidelines for various types of cancers. I liked looking at them to have an awareness of what the correct treatment is and then knowing that my doctor followed it.

There is a lot on my blog as Lauren mentioned (thanks!). But of course you can always send me an email if you want to talk more. My email is randsrath@tds.net. Cancer is not for pussies but stay strong and you can kick it's butt!!!

Peace,
Steph

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If pigs had wings...away they'd fly!!!
www.ifpigshadwings.blogspot.com

41yrs and still having fun FEV1 26%, FVC 38%
Infrequent O2 user, NAC groupie, thoughtfully considering transplant.

Thank-you both for getting in touch. Things have changed for me as they have realised that some lesions in my liver are cancerous. They are too widespread to operate on, so there isn't a great deal that can be done in terms of a 'cure'. I am being offered chemo in order to shrink back the tumour in my bowel, and a stent fitted within it so it can be opened up. I had a barium enema today which showed a stricture, so food hasn't been passing through properly and I keep getting blocked. I feel so sad about the news it is hard to take in. I do wish docs had caught it earlier. Kept being told that the blood in my stools was piles. I have to try and pick myself up to keep on fighting, but as everyone with CF knows, this isn't always easy.

Hey Lila. This is really crappy news. I got a card a week or so ago talking about how important it is to have hope. I'm not trying to say that you can be cured but rather that whatever comes that you have the hope that it will be as easy a journey as possible. Saw on another post that you are into yoga. I love it too and it is a huge help when things get really bad. Here's to happiness and peace

Namaste,
Steph

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If pigs had wings...away they'd fly!!!
www.ifpigshadwings.blogspot.com

41yrs and still having fun FEV1 26%, FVC 38%
Infrequent O2 user, NAC groupie, thoughtfully considering transplant.

Thanks Steph, It is so important to have hope and I appreciate your timely reminder. It is the times when I feel helpless and without hope that I feel the worst. I suppose my hope in terms of a possible 'cure' have been dashed, but that's not to say I won't have more good times in my life. I will take inspiration from you lovely people and try to carry on with a more positive outlook. I have too for the sake of my daughter and rest of the family if not for myself. I really enjoyed reading your blog, inspirational stuff. So good to hear another cfer who's into yoga. It's really helped get me through over the years and glad to hear it has been of such benefit to you. I had some reiki today, I do think that helped to relax me and put me in a better headspace.
Namaste
Karen (Lila is my lovely dog)

Hi Karen,
My husband with cf has lots of digestion problems but recently we started drinking green smoothies from the book "green for life" by Victoria boutenko. They have tremendously helped him and it might be worth a shot to help your stomach heal. Sending lots of prayers and hope your way!

Hi Karen,
My husband with cf has lots of digestion problems but recently we started drinking green smoothies from the book "green for life" by Victoria boutenko. They have tremendously helped him and it might be worth a shot to help your stomach heal. Sending lots of prayers and hope your way!

Hi Hope and Love,
Glad to hear the smoothies have been helpful. I'm wondering whether to try some natural remedies instead of chemo. They have said that chemo may extend my life a little but won't offer me a cure as such. I don't fully understand which stage my cancer is at, but if it's as widespread as the doctors seem to think I'm not sure that I want to put myself through chemo, if it's going to be very unpleasant. I was thinking about a high dose of curcumin, about 5g a day, milkthistle and aloe vera juice. Any thoughts anyone? Thanks for all your responses, they are so helpful.
Karen

I've heard of someone who hired someone to come in and juice (including shopping to procur the veggies/herbs/fruits) to rid the woman of cancer AND it worked. So you might look into other options if they aren't even hopeful that the chemo would cure it. Miracles do happen!

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Lauren 33, G551D and DF508, 4 year old son with S1235R and G551D

Prayer is powerful, and I will pray for you. Hugs!

e

Thank-you LouLou and luv2run. I'm looking into cures with nutrition and thinking about trying the juicing. Though would also have to hire someone to help shop and prepare the juices. Thanks for prayers and hugs. Much needed at this time.

Hey, I know my old CF doctor did a study linking a higher increase of colon cancer with CF. Not that that is at all helpful to you at this point. I think her push was for CFers to get colonoscopies done sooner then the normal recommended age. I do not know what ever happen with that as she is not my doctor anymore.

I am so incredibly sorry for your news of it spreading to your liver. I am going to join the ranks of people who are praying for you.

Sending prayers for healing,



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Dx with CF at the age of 29 in 2001 DF508 /q1330e. Was undiagnosed because of nor negative nasal pd but was rediagnosed.after seeing a more experienced clinc. Also have severe VCD , gerd and a hole in my heart called a PFO that was closed and now infected!

Thanks for your response and prayers JennifersHope. I think it would be such a good idea if CFers had colonoscopies as part of their investigations from a younger age than the rest of the population. I'd been trying to tell the doctors that something was wrong for a long time. Always put down to CF symptoms and later on piles. Feel really sad today as been told that I only have 6-9 months at best without chemo. Could have 2 years with chemo in best case scenario, but this could shorten my lifespan if I do succumb to infection. Now have to somehow share this with my daughter, and workout what to do next. Very difficult.

I am so sincerely sorry... I wish I had words for you.....I don't talk to that doctor any more that did that research, she is a brilliant doctor though and she was really on to something with having CFers get tested sooner...

I can not imagine what you are feeling, dealing with, and going through.. Honestly I don't think most people can, they can only imagine, guess, or try to block it out of their head.

Your daughter is a lucky little girl to have a mom like you, so brave, so courageous. I pray with all my heart that you will become a case example for every CF center to be more diligent about listening to their patients when they say something is off...

Please keep updating us, I am praying for you.. for your family and your sweet daughter. I don't know why these things happen.....I don't understand the mind of God, I know he loves us though.

Love, prayers, and support.

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Dx with CF at the age of 29 in 2001 DF508 /q1330e. Was undiagnosed because of nor negative nasal pd but was rediagnosed.after seeing a more experienced clinc. Also have severe VCD , gerd and a hole in my heart called a PFO that was closed and now infected!

I don't know what to say but that I am so sorry you are going through this. I have read your posts before, and felt useless to respond. Now I just want to say that I am thinking of you and praying for you and your daughter xo

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Kelly, female, thirty-freaking-two!!! w/ CF, diagnosed @ 2, PA, aspergillus, ABPA, also ITP (Idiopathic Thrombocytopenia Purpura, an autoimmune disease that destroys my platelets, causes me to bleed like a mf, and complicates my CF to no end)
I have 2 fur-babies, Howie and Mouse