Bowel Cancer and Chemotherapy

[jen09]

Hi all, I am looking for support and hopefully some help and information.
I am from the UK and have a sibling with CF(diagnosed shortly after birth).
Surgery has already been performed to removetheprimary cancer,Adenocarcinoma of the bowel which had caused an intestinalblockage. Unfortunately it is stage 4 cancer and has spread tomy sistersliver. My sister had a right hemicolectomy and has been left with a stoma.
Docter's seemed initially reluctant to proceed with chemotherapy, as they do not know the risks involved in treatinga patient with CF.
If anyone out there can help in any way, maybe a friend, relative, or partner of someone with cystic fibrosis who was treated with chemotherapy, please please contact me, via the forums or privately.
Any stories, links oradvice greatly appreciated.
Many thanks

 

[JennifersHope]

I would find a different doctor who did know. I know we have had Cfers on here with bowel cancer, Cfers are actually at higher risk for that type of cancer. I know the Cfers here in the State did get chemo.

Lots of prayers.

 

[jen09]

Docter has given the go ahead for Chemo. But still no research has been provided. We have asked them to contact major hospitals. Not much has been done?

Treatment is on the NHS over here, as going private is extremely costly.
The drugs that they have chosen to use are 5-FU, Oxaliplatin and Avastin.

Thank you for your prayers.

 

[moxie1]

I've read about cases of cf where symptoms have completely gone away while doing chemotherapy.

 

[moxie1]

Google sharktank chemotherapy cystic fibrosis and read the posts under "Melanie's Blog" This is where I read about the chemo stopping the symptoms of cf.

 

[holmbers1]

Hi Jen-I'm so sorry to hear about your sister. It sounds like she is in good hands though-sounds like they are doing the right things to help her.
My story is a bit different in that my husband is the one with CF. I was actually diagnosed with colon cancer-stage IV last february. I too, was almost blocked. I just underwent a big abdominal surgery where they ended up giving me a colostomy (stoma)-like your sister. I actually have undergone chemo last year-sounds like the same drugs they will be giving your sister. In short, it is called Folfox. It's a combo of 3 different drugs. The avastin is not a chemo drug, but it is used with the chemo to prevent blood flow to tumors-so they do not grow. I was on this as well, and it can cause blood thinning/blood clotting/could cause you to bleed easily. I never had an issue with it except for a bloody nose once in a while. If you have any questions, I'd be happy to help as much as I can.
I am not sure how this will effect your sister since she has CF. That is a lot to deal with, and I pray she is strong for this. Bless her heart. But every CF'r I've known is so strong,,,I know she can do this.
Colon cancer does run in my husband's family-his grandfather had it. So he should probably be checked early too....
Please keep us posted on her. She is lucky to have you there for her-supporting her. That is so important.

 

[LittleLab4CF]

Adenocarcinoma, for those CFers who haven't put this on their watchlist, need to be proactive either through colonoscopy, or even frequent sigmoidoscopys. Although epithelial glands are a common target, any mucosal cell, especially genetically malfunctioning CF linings, throughout the body are big targets. It is high risck for CFers and though like similar cancers that sneak in the back door aren't sending up big red flags resulting in advanced cancers found more often than say stage 1. This one of the "die badly" ways to go from complications due to CF.

This is so heart rendering, please accept my sincer hopes for a good outcome. I lost my sister in 2008. Her death was suicide, due to complications from degenerative mental illness so the only thing in common is she died after a lifetime fighting a chronic debilitating disease. Your instinct to help her fight for her life with all tools available is how I would go. Chemo is no walk in the park, but compared to even 15 years ago, long standing statistics aren't valid today. Your mental health effects your sisters health, mental and physical. Cancer survivors I have seen that beat the odds are typically fighters willing to endure whatever is necessary to give them the best chance of survival. Seeking help in this forum appears to have born fruit.

Everybody faced with advanced cancer has weighed and weighed again and again if this if a fight for fights sake, or whether to let the disease take its course and join in the ultimate adventure as soul and spirit devoid of a physical body. Years ago, a family friend was diagnosed with ALS or Lou Gerrig's disease. There is one outcome from ALS, period. I watched and through this vicarious experience, they bought a home gym, being Catholic, they sought comfort in the Saints, and put the power of prayer along with any and all current, although often slimly supported possible aids from anti-oxidents, suppliments, etc. It was a whole family doing all they could to fight what in my opinion, was a futile effort from day one. I joined in their efforts, supported every mainstream to lunatic fringe attempts to cure, delay the disease progression and maintain quality of life. I believe he lived better and longer than had he would without the constant hope, which in the final analysis was the real sum of their efforts. This fight of fights with a team of medical professionals including homeopathics. and a dedicated, supportive family gave a dignity and importance to his life that was worth every dollar, prayer and tear. Although we don't advertize it, Cfers, and their families occasionally prognosticate based on what's going on at the moment, and when things temporarily slip, or are in decline. I have known people who's bodies are riddled with this type of cancer beat it, so this is nothing to be thowing in the towel on yet or ever.

 

[jen09]

Thank you so much for all the replies. A little hope and inspiration certainly helps.

Everyone should be aware that the risks of developing an intestinal cancer is INCREASED if you have CF.

Doctor's over here seem a little bit blinkered on the subject?
Yes, we have GREAT, specialist CF Centres and Care Teams that really do such wonderful jobs.
But, Doctors failed to look for another diagnosis, when treatment for DIOS was failing. It was horrendous for everyone involved. But really does show my sister is a fighter!

At this stage there are no programmes put in place for regular colonoscopy/sigmoidoscopy. Not sure if thats the same for you?

I urge everyone to trust your own instinct, and speak up if you really feel something is wrong.

My sister has lots of support with family and friends to help her through, and no one is ready to give up, especially her .

Thank you LittleLab4CF. You are right to never give up. We must all continue to live as normal as possible, make plans and goals. There will be Highs, and Lows, but the need to continue should be strong.
We too have looked at herbal supplements and juicing as part of a balanced diet, certainly no harm in that

Thanks for the link moxie1,made very interesting reading.

I will keep everyone updated

Thank you all.

 

[Nardia]

HI Jen,

I am a 44-year-old woman with CF living in Australia. I was diagnosed with bowel cancer and had the surgery it was discovered I had stage 3 Adenocarcinoma of the bowel and was advised to complete my treatment with chemo. This was back in 2009 and my team did not have a lot of current data or info on CFers having chemo. Thus with much discussion and preparation, I decided to have the chemo. Now three years on my lung function is roughly around the same FEV1 58% and my health is Ok. I have since had a small cancer in the lung which was removed in Feburary. Things look ok at the present moment!

The team decided to continue with IV anti's for the entire treatment, which I managed from home with lots of support via hospital in the home services. I did have alot of trouble maintaining my weight and the treatment was difficult. Infection was a huge risk thus we took many precautions to prevent this along the way. It was a really difficult road but I am proud to say I came out stronger and more focused on a bright future. I did have many hospital stays along the way as I did become very weak and unwell. We set goals and managed treatments from both home and in hospital.


I am more than happy to provide more detail and talk with your sister or yourself further. All of my care is through the Alfred Hospital in Melbourne Victoria, and they have been great. We spent a lot of time with the team to ensure my outcomes were as positive as possible. I hope this helps you and your sister.

Chemo is tough and needs to be considered carefully as in my personal experience I became very weak and was unable to engage in most of my normal activities. I encourage your sister to discuss The overall goals and outcomes of chemo both her expectations and those of her medical team in making a informed decision as to wether to go ahead.

I hope this helps you and your sister. I would be happy to speak further with yourself or your sister regarding my experience email me at smithandhope@hotmail.com