New & looking for some advice

[suesdad]

Hi Everyone,

My dad was just diagnosed with stage IV colon cancer on 5-30-12. He has Mets to the bones, kidney, thyroid, liver, lungs and possibly stomach. He just went through immediate radiation on his spine and starts chemo on Monday. He was okay the first couple of weeks and now has gone downhill with the coughing/breathing from the lung mets and now he can barely eat. I am trying so hard to be positive, but I am loosing hope.... He is very sad and I can barely contain my own tears when I am around him. Anyone know of anyone that the chemo helped at this advanced stage? My dad wants quality not quantity... Thank you and God bless you all!

[Bev G]

Hello Sue (?),

I am so sorry to hear that so many things are already involved at the time of your dear dad's diagnosis. What a mess! The first weeks/months after a cancer diagnosis are often almost unbearably confusing and terrifying, and with everything going on with your dad, I'm pretty sure this is the case.

Is your dad at a major hospital with a comprehensive cancer center? If there is any possibility for that, it might help, as there would be, under one roof, all of the specialists who could put their heads together to come up with a plan. You said that your dad wants quality, not quantity of life, and it seems that you will support him in this choice. Good for you! Does he even want chemo? Even if he does, I hope you will try to facilitate getting him to the palliative care people who are experts at pain control and other comfort measures (they are not hospice, and many people think they should be brought in to folks with a stage IV diagnosis from the beginning).

Are you your dad's primary caregiver, or is your mom? If it's mom, how is she doing? There is a wonderful thread on our board for wives of stage IV husbands (I know you would be welcome there, too).

You asked if anyone knew of anyone where chemo had helped at this advanced stage. I so wish I could think of an example that I am aware of, but I can't. Many board members will be reading your question, and perhaps someone will. I think this is an awful and grim situation, but one thing I've learned in the almost 3 years I've been a stage IV is that we all are individuals (obviously) and people react differently to treatment, some much better than others. I don't think it would be doing you a favor to sugar-coat this, but I can promise you this, whatever you come up against, we WILL be here to support and try to (((hug))) you through it.

God bless you, Sue. Please come back soon.


Bev

[thostie]

Sue,
My cancer had spread through my lymph nodes to my liver (i started with so many liver tumors they couldn't count them) then to my lungs. I was told by my first surgeon that chemo for life was my only option and most likely it would not work because my cancer was so advanced. he told me i had a year give or take. By my third treatment my CEA was down in the normal range and my first CT showed shrinkage through out. now i only have three tumors in my liver and my lung mets are gone. The end of this year will be my two year cancer anniversary. I am still on chemo but i am in a very manageable position and even though I've had a small set back in treatment recently I have so much hope that i will have surgery this year and be NED.

I hope my story gives you and your dad some hope. im sorry you have to go through this but if you ever need to talk or to vent, this is a great place to do it i wish your dad the best with his treatments.

[Kathryn in MN]

I'm sorry to hear about your father's situation.

Considering your dad wants quality over quantity, maybe he can try chemo for a few cycles and see how it goes for him. If he tolerates it well, it can give him more quantity, and it could possibly give him more quality if it stops progression and shrinks existing tumors. But if the side effects give him more troubles than what he gets in benefits, he could choose to stop and enjoy what time he has left.

[RixInPhx]

So sorry for the diagnosis, that is pretty rough.

The first-line chemo attack will *probably* be Folfox6 + Avastin which is pretty standard for advanced stg IV CRC.
See the terms in Terminology and Abbreviations thread.

There are major side-effects to these drugs, so do some searches to familiarize yourself with them.
* Folf (Folinic Acid + Flurosemide): Weakness, fatigue, diarrhea, constipation, nausea.
* Ox (Oxiplatin): Sensitivity to cold air and beverages, and to grasing cold things things; progressive neuropathy of fingers and toes.
* Avastin: Damaged blood vessels are slow to heal, may result in bloody noses; possible cardiac issues.

Discuss them with the oncology nurse, and get instructions of how to respond to each.
Start a three-ring notebook in which you keep EVERYTHING related to treatment: Test reports, instructions, list of medications, etc.

HTH, Rick

[suesdad]

Hi Everyone, Thank you so much for posting, I am truly greatful! I wish you all many prayers and positive thoughts.... I have been reading all your posts for the past few weeks and I am so amazed and touched by all of your strength!

My mom is my dad's primary caregiver and unfortunately, she is in a denial state. I think she is finally realizing the gravity of the situation which is not going so well. I think she has aged in the past 5 weeks by 10 years. She has the grandkids to help keep her busy an smiling... I honestly don't know if my dad really knows all the places that the cancer was found.

My dad had a cough for about 8 weeks, (dry, un-productive) which he said was allergies... He worked out everyday (God bless him) took a ton a vitamins and ate organic, so he was in great health up until this point. After 3 weeks of nagging and him starting to have trouble breathing we finally talked him into going to the urgent care center. I think he thought that he had pnemonia at this point was going to get some antibiotics and go on his merry way. The urgent care did a chest xray and immediately sent him to the ER. (Pause on the story but by the morning we got him to go, I had an awful feeling). By the time my sister and I got to the ER they had ordered a CAT Scan of his chest. Still at this point, he was telling us he was going home that night and they were just giving him some IV antibiotics. He was goofing around with the nurses and doctors, etc. The next day we went up and all the docs had been in and he said he had an oncologist. They said he had cancer in his lungs and there were other spots they could see at the bottom that looked like they were in the liver. The next day they told him (by some weird timing, the oncologist always seemed to get him alone) they knew the lungs were not the primary source.. After my dad gave our family history... oh yes, my aunt (his sister) dies of colon cancer at the age of 49 and his father had colon cancer, but beat it. Well then I think the writing was on the wall where the primary source was. Many tests later, they said there was tumor in in his colon that had to come out asap. It was in a "good spot" so he had the re-section, no bag. At this point we know it is in his liver, lungs and the pain in his legs/back were from the mets to the bone.

We fortunately have a family friend who was able to read all the scans and get copies of the reports, which was when my sister and I found out it was in many bones, the thyroid and kidney. The report stated "inumerable" nodules to the lungs and liver... Our radiologist friend told us it was as bad as it gets and was wondering why they had not scanned the brain. I heard my dad telling my aunt a few days later that he had a couple of spots on his lung and just a few on his liver. SO I don't know if he is protecting everyone or if that is what he thinks..

Fast forward, radiation for 15 days to get the spine, his very upbeat " I am going to beat this" spirit is gone. He is in pain, vomits, having trouble swallowing (his esophagus is very irritated, GI doc says he has to be realy careful what he eats so he does not choke). I go see him everyday and he is wasting away to nothing and has not even started chemo yet..

And the big question which has now made him breakdown on occassion was why did he not go and get screened?! Because he was fine, in good health.. blah blah.. doesn't matter now which I told him. I just can't believe that this is happening... I love him so much and I really can not accept that he may pass away.. but I hate seeing him in pain and his spirits so low.

Sorry, I am venting and I am not sure how to keep moving forward when i just want my dad back... Thanks again for all of your replies, I felt some comfort from you all. I will keep praying for you all as well..

PS> I am Sue and 36 yo and my sister is 38 and we are both scheduling our colonoscopy in the next couple of months.

[RixInPhx]

We will always be here for you Sue, and anybody else in the family who wants to stop in.
Vent away any time, we are the ones who get it.

Not to put too fine a point on it, but I think you need to contact hospice relative to fnial care and support.
They are generally very knowledgeble, informative, and helpful.

Best wishes, Rick