The Colon Club

Welcome to Colon Talk, Carlotta. Yes, this thread is still alive, though not the most active. Also it is not just for wives contrary to the title. Many choose to ask questions by starting their own thread on the main page for visibility in reaching a broader audience. So you can come here w/questions/discussions w/other caregivers or patients too, may pop in from time to time.

Here is a link to creating your "signature". It really is very helpful for others to understand your situation @ a glance in answering questions w/o having to repeat your history w/each post you might make:
viewtopic.php?f=1&t=52681&p=421597#p421597

For instance you can read mine which tells you a little bit about me. I was also a caregiver.

This is also a helpful link to terminology & abbreviations. Helpful in setting up a signature, understanding the signature of others & kind of a shorthand while posting:
viewtopic.php?f=1&t=5366

The search box is a great tool for researching info on here using keyword(s).

Is there a major cancer center near you for a 2nd opinion? There is also a space for proximity if you're comfortable with that...doesn't have to be exact. Memorial Sloan Kettering, New York City is well known on this site as the top cancer center in the United States for colon cancer. Is travel an option in seeking care?

Have your DH's docs mentioned clinical trials @ all?

Best Wishes
BS

Hi, many thanks for all your helpful info, BS!

I was wondering how on earth people created those 'signatures' - will attempt to fill out as much as I can, with husband's help, though I suspect we wouldn't know every bit of data on the sample signature.

As I read your queries about location and second opinions, it dawned on me that this may be a mainly U.S. site - not a problem at all, but I just hadn't thought about that. I am in fact a native New Yorker but live in the UK with my British husband, who has the colon (rectal, in his case) cancer. We are fortunate enough to live in in the London area so he does have access to some of the best doctors and facilities here - that is on the bright side! on the other side, though, there may be WOULD treatments in the US that are NOT available here - and yes, if he were medically eligible for them (and if we could afford them or they were free in clinical trial), and we ran out of options here, we WOULD travel.

Sloane Kettering and NYU hospital are both known names to me, and I have loved ones with experiences of cancer treatments (not colorectal) at each. I know that at Sloane K Nancy Kettering is renowned for HAI pumps, NOT something available to us here, at least so far. We also want to learn more about the liver transplant surgeries carried out at the Cleveland Clinic, Toronto, and Norway. i shall put a query on main forum soon.

i will literally go to the ends of the earth to try to save my husband's life.

thanks, and hope to have signature in place soon,
C.

Hi Carlotta, Welcome!

Another wife here, I’m in France.
I believe that you have found the best place to be when this has happened in your life (I have looked around and for me this is THE best place for kind support and good info that I have found!!!)

This thread was such an important read for me, I read it All while waiting for DH’s exact diagnose. It sort of prepared me for what might be coming..,
I have been active in this thread before. My husband is NED know and he/we are trying to forget and live life. No.. not true, it is living until next check-up, for him the next is probably in December.

So sorry to hear that your Doctors are not giving your husband any hope regarding liver surgery. I don’t know what you can do in UK..? While looking for specific cancer hospitals here in France I read that it was possible to send Scans (and other relevant info) to big hospitals and get a 2nd opinion that way. My husband got a 2nd opinion on a ‘live’ appointment with a professor in Bordeaux (he has a specialist interest in liver surgery), and both hubby and I felt very good choosing him.
But please know that my husband had 3 smaller liver mets and they said that DH’s liver mets where resectable.

Reading this site/forum it feels as there are ways to find out about treatment that you did not know existed. It is a bit scary that your health professionals do not give you info of all possible treatments that are ‘out there’...
I wish and hope that you can find the best treatment!!
Please do post a separate post asking specific question - more people will see and you will get more replies.

About creating a signature. I learned a lot!!! while doing that. I had to dig for info and read/learn about for example KRAS and MSS. It felt like learning a new language

Again, Welcome!
Kind regards /LPL

Bonjour LPL, so good to hear from you!

Yes, learning all the signature jargon is a challenge! I have added a signature for now, which I will no doubt revise with time - I kept running out of character allotment though so had to keep editing!

To clarify regarding our knowledge of other options: My H and I are very avid researchers - it is just how we deal with stuff, instinctively - and I have a decent, albeit nonprofessional, science background so I am the one that pours through the scientific literature worldwide. I am also VERY fortunate to have as my two dearest loved ones in the US, a godmother AND a best friend that both survived different forms of cancer and are hugely strong in scientific knowledge and based in NY, so we think of them as our adhoc 'U.S. team' ready to help in any way they can if we run out of options here. They can't cure H, but they can help with NY inquiries and making contact with docs there if we want.

So far, my sense is that part of the limitations on treatments here has to do with UK laws governing who can get what treatment, EVEN when paying privately (ie private medical insurance). So, for instance, our oncologist said that UK law would not ALLOW for H to have a liver transplant because advanced colorectal cancer with liver mets is not in the list of accepted eligibility requirements for liver transplants - EVEN witha willing live donor offering!

I am guessing that the US might not have those limits, but maybe I am wrong.

Similarly, oncologist said that in Britain they just 'don't do' HAI and that answer was echoed when I asked the main cancer charity here. They say the treatment doesn't have enough evidence to support it being used, according to the UK medical establishment - or so I was told.

My feeling is that if M is ultimately deemed 'incurable' according to allowable UK treatments, we have nothing to lose by trying something else available elsewhere!

But for now, we are continuing with the chemo just in case maybe, maybe they can shrink his mets enough to attempt surgery. the docs DO want to save him - absolutely they do - so IF his body responds exceptionally well to the chemo and the liver mets shrink enough, they would reconsider surgery. Plus we are setting up a meeting with the liver specialist who works with the onc, to see if he can explain more and answer our queries directly.

Thanks again and best wishes to you and your husband,

C

Sending you hugs Carlotta! I've often told my DH that WE have to be the advocates and ask the questions. Often, doctors don't recommend treatments because they don't know or they don't have it at their hospital.

We were told Pallative too because of numerous liver mets. Here we are 22 months later. DH has said he's going to keep going as long as he can and pray for more advances in the meantime.

M

Wives,

Is it just my nose or does your husband’s cancer have a rancid smell to it?

I clean the bathroom religiously, yet the whole house smells so bad! I don’t know what to do...it’s really hard to stand it.

Carlotta, thank you for kind wishes.
You wrote: “

oncologist said that in Britain they just 'don't do' HAI and that answer was echoed when I asked the main cancer charity here. They say the treatment doesn't have enough evidence to support it being used, according to the UK medical establishment - or so I was told.

”
I wonder... have you or anyone seen those statistics? I have heard quotes like that before but have seen many! members having good results. It would be interesting to see actual research/statistics about this.
Regarding liver transplants, I do not know for sure but I think it can be done in France? Have you checked? I remember a US member talking about it as a possibility and also mentioning Norway I believe.
So good to hear you are researching info.
I’m hoping that the chemo your husband is on now will shrink his tumors!! Your signature is mentioning bad side effects... I hope these stopped and is not bad now.

All the best to you. /LPL

Hi again,

Sorry it took me so long to reply, LPL. We have had a very difficult week.

As I mention in my signature, my husband's chemo has induced epileptic seizures, which are terrifying for both of us and of course can be dangerous for him (losing consciousness and hitting the floor, etc.) These so far occur always 7-10 days after each chemo session, and chemo itself is every two weeks. Also, the seizures are preceded by mania, ehich I recognise but he can't.

Sure enough, he had chemo two weeks ago on the Wed, then last Tues evening he became manic, and Wed evening he had 3 seizures within 5 hours. We spent the entire night at the emergency room and he was kept in hospital for another full day and night for observation, then discharved back home with yet higher dose of his anti-seizure drug than before.

And today is chemo again. I find all of this VERY hard. I am the only other person at home so feel so much responsibility for keeping him safe, ringing ambulance, etc. Not fun.

But this afternoon he is going directly from chrmo to meet md gor a theatre matinee. We do what we can to enjoy fun things still.
Will write more soon. How are YOU and your husband doing?

I wish you well,
Julia

Hi there,
My name is Kim Moore and I my husband is also stage IV, in April 2016, we moved out to the country to a smaller home, but with a large ass yard to give the hounds a space to run in... He had been having some pain for the last couple of months but we thought was stress from the move, when it became unbearable he went to the doctor and they discovered a 10CM tumor. He had a resection and was staged 3C, he then had 6 mos of FOLFOX and was good until July 2017, it came back on the liver, had liver resection, more colon, more abdominal wall. They also discovered at this time that he has stage 4 Cirrhosis of the liver. (This is due to Antitrypsin Deficiency, which is an inherited condition). He was good again until July 2018, he has Peritoneal and Serosal Cancer, several tumors over 4CM and multiple nodules. Also has tumors on Kidney, Adrenal Gland and Stomach. He is considered terminal and inoperable - That being said, he is still feeling good and working full time. He also started Folfury and Avastin this week - he is on Chemo for life he cannot be cured or even have surgery, the chemo is only to buy more time... I am finding this all a bit surreal - we had so many plans - we had a short weekend vacation planned for this weekend which was just canceled due to things out of our control. We hope to take a week long trip in our RV next month - (I am really hoping we can do this). Perhaps others can chime in and let me know if it is even possible. I know each journey is different, but I am thinking this might be the last time we have to do anything like this. I'm also very scared... I just don't know what to expect - I did buy him the foods he liked while he was on Chemo last time, but he is already not eating at all...

Kim,

Welcome! I just wrote you a massive reply answering all your points and the site just aborted it - totally disappeared! aggggggh!

Will have to try again tomorrow, sorry.

Meanwhile, YOU ARE NOT ALONE.

hugs and support,
C

Hi Kim, If the Doctors agree, and if your DH feels up to it, do what you/he want. We don't have hounds or kids: DH likes to work, I work anyway, and we like to travel. So when he's feeling good, we do weekend trips and we've done longer trips too. The two week trip was a bit much but the 1 week ones seem to be fine. I do make sure things can be canceled (Ie Southwest airline tickets) and I never do non-refundable hotels.

He's currently on Vectabix and a partial dose of Irinitican (the IRI in FOLFIRI). Hopefully we can buy some time with that as it's working nicely now. Then there will be other things later. Perhaps a clinical trial.

Sending Hugs and Prayers,

M

To move a topic back onto the first page all you need to do is make a post into that topic, otherwise known as "bumping" a topic.

This post will serve to bump this to the first page. If members wish to keep it active, just keep posting into it.
It was not lost or locked, it was just inactive.

Bumping up

radnyc wrote:Bumping up

radnyc, do you want caregivers and loved ones to post in this thread and not participate elsewhere in ColonClub?

Hi LPL ,

I honestly don’t think there is a push for that but probably a hint at appropriate use of the forum . I think most care givers want the forum to remain relevant for all but with a priority for people enduring the physical and emotional aspects of the disease . When the balance is off patients start voting on their feet and stop posting . Apart from the fact they miss the valueble support it is often them that offer first hand information to carers to pass onto the patient . My mum formed her willingness to have lung surgery from first hand information shared here .

I think respectful posts with a sensitive approach have only been met with openness. Maybe some posts could be grouped a bit better to keep it relevant for all people .
Take care ,
Stu