Newcomer - advice needed

[Toto]

Having just discovered this forum I wondered if anyone has any advice to offer for my situation. I have colon cancer with mets to the liver and lungs. My oncologist has given me 8 - 12 months which was about 3 months ago. Lately I have been getting progressively tired to the point now that I can only walk about 20 mins a day before total exhaustion sets in. I guess what I am trying to find out is if end of life is near - with a young family I want to prepare things but I never realised how cancer fatigue could be so debilitating. I am starting to get pain in my right ribs and back but have meds to manage this. Does anyone know how things pan out at this stage - I know every case will be different but any advice would be most helpful. Thanks.

[midlifemom]

No advice to give you regarding fatigue being an indicator of end of life.
BUTT, I wanted to welcome you to our site.
Also, if you provide more info, it will help us to help you.
For instance, has the primary tumor been removed? Are you receiving chemo? Are you on medications? What does the doctor say about your fatigue?
Let us know.

[Toto]

Thanks for the tip. My situation is as follows...

Emergency ileostomy one year ago for Stage 3 colon cancer.
No mets visible on CT at that time.
6 cycles of Folfox which ended Xmas 2014
At review CT in March 2015 mets found in liver, lung and abdominal lymph nodes.
Declined further chemo to enjoy quality of life with family.
Suffering from Cancer Fatigue which has got progressively worse but blood tests show no sign of anemia etc.
Meds being taken - Tramadol, Pregabalin, Oramorph, Dexamethasone and Methylphenidate.

[Bev G]

EDITED TO ADD:

Toto, you and I were writing at the same time, so I just saw your second post. I was assuming you'd just been diagnosed when I wrote this. I would still recommend that you get a second opinion at an NCI center, especially to make sure you were properly informed about the discontinuation of chemo, as well as any surgical options you might have. As far as the cancer fatigue, it is real and it is really hard. I was diagnosed stage IV 5+ years ago. I has extraordinary fatigue at the time I was diagnosed. Unfortunately, I still have it. I don't know that it's a sign of end-of-life in your case, butt, it is very, very common for many of us. Sometimes docs prescribe Ritalin or similar drugs to counteract the fatigue---something you could talk to your onc about.

Hi Toto, and welcome. Probably this is the scariest time of your life, and I'm so sorry you are going through this. We've had lots of members here who were given a matter or months to live when just diagnosed, and many are still alive years later. Of course no one here knows exactly what is going on with you, so giving you much in the way of advice at this point isn't likely to be very helpful.

However, a few suggestions for right now might help:

1) Do WHATEVER you have to do to get to an NCI cancer center. I would suggest that even if you aren't close to one, find a way to get there. I'll post a link to the NCI site so you can see where you need to go. With a new stage IV diagnosis you want the experts to help you get on it right away. I am guessing that you are not at an NCI based upon what the oncologist told you.

2) Get copies of all of your lab work, scans and whatever other testing has been done. Get a big notebook with dividers and start filing that stuff in it. My notebook from just the first two years after my stage IV diagnosis is 3" thick.

3) You might want to explore joining the Caring Bridge site as a means to let your family and friends know whatever you want them to know, so you are not burdened my endlessly repeating yourself about what is going on. There are also sites what provide a means for asking for the help you need (transportation, meals, help with childcare, etc) I'm sorry I can't remember the names of any of them, butt a Google search should help you locate them.

4) The initial time after diagnosis is always total chaos. You are probably feeling both terrified and totally out of control. As a plan for the management of this develops, you will feel better. Don't jump to ANY conclusions right now. You are embarking on a "journey" no one ever asked to go on. You will find you are able to do things you never imagined you would. While all the initial stuff is sorting out, don't forget to B-R-E-A-T-H-E.

5) Don't Google colon cancer stats. You will freak yourself out, and it becomes so difficult to remember that the stats DO NOT APPLY SPECIFICALLY TO YOU. Many of them are outdated, and you won't yet have the context to helpfully apply them to your situation.

6) Get help if you need it in talking about your diagnosis to your kids. It will depend upon their ages, and a number of other things. I hope there is a social worker affiliated with your onc's practice who can help you with this.

Come here as often as you'd like. Between all of the members here, we've pretty much been through it all. We will do everything we can to support you through this.

Best wishes to you,

Bev

[rwightman]

Listen to Bev, she really gives the best advice. Wishing you the best. Stay positive!

[jillbugs4110]

I agree with bev she is right. I understand where you are at very well one day at a time.

[orcasres]

One more person who agrees with Bev. We are here to listen and help. Lois

[lhawk0730]

Just to clarify: Did your onc give you 8-12 months to live before or [i]after[i] you decided no more chemo? I only ask because that would personally change my opinion about him as a medical professional. If he gave you those stats according to you undergoing chemo, my instinct (again, not being an MD and without knowing more info) would be to run to the next open 2nd opinion available while I immediately got my records over to a major cancer center. If the 8-12 month diagnosis came after your refusal of further treatment, he may have been respecting your decision and made his best guess as to a life expectancy based on your choice.

Again, none of us are doctors.

So sorry you found your way here. This board is amazing in terms of information and support.

Read more about this forum. People do beat stage IV CRC. Those who dont beat it treat it successfully for many years. (If you want some gritty inspiration, look up Frenchie. If you want a glimpse of additional time with your family, look up Belle {singingholly}, if your wife is having a hard time, look up WifeofMike...they stand out me at this moment.).

You have hope! You may not have a cure, but you might have the chance to make many more memories with your kids and wife through treatment.

[ANDRETEXAS]

When you were diagnosed with Stage 3, did you have any surgery before the chemo? Welcome to the forum. Andre

[Nik Colon]

I would also suggest a second opinion, please keep us updated and best wishes

[Toto]

Thanks for all your advice and support - there's a lot to take in. My background is as follows:
Had emergency surgery a year ago to remove Stage 3 colon cancer, 5 of 19 lymph nodes involved resulting in. ileostomy which was going to be reversed this summer. Had 6 cycles of Folfox as no other signs of mets in liver or lungs which finished at Christmas. However, review CT scan in March this year showed multiple small mets in lungs, 1 in liver and numerous LN involvement in abdomen. Offered palliative care chemo but declined. Under the care of local Hospice. Based in the UK so receiving plenty of support from GP and Cancer Hospital.
Meds being taken include - Pregabalin, Methylphenidate, Dexamethasone, tramadol and nightly Dalteparin jab (following Pulmonary Embolism in Oct last year)

[Nik Colon]

I know it's a personal decision but I was wondering why you chose not to do more chemo. It looks like you were NED then when you got new mets you just gave up. I hope that I am misreading this as there are still many options for you.

[Toto]

My oncologist advised me that 6 cycles were as effective as 12 and that the surgeon was confident that the tumour had been excised. At the review meeting the mets were resistant to chemo given their size they must have been growing during my chemo treatment. They told me that given the number of lymph nodes involved it was incurable and any further chemo was only likely to prolong my life by a few months. Having already suffered a pulmonary Embolism while on chemo I made the call which my oncologist confirmed was a brave but wise decision.

[Nik Colon]

My oncologist advised me that 6 cycles were as effective as 12 and that the surgeon was confident that the tumour had been excised. At the review meeting the mets were resistant to chemo given their size they must have been growing during my chemo treatment. They told me that given the number of lymph nodes involved it was incurable and any further chemo was only likely to prolong my life by a few months. Having already suffered a pulmonary Embolism while on chemo I made the call which my oncologist confirmed was a brave but wise decision.

I see, I truly hope you do get another opinion tho, but either way, best wishes to you and (((hugs)))

[jillbugs4110]

You are brave and I commend you.