mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[skypup]

ruby, it's just the hardest thing ever, and that's without children. All I can say is on good days I am able to live in the moment. So sorry you are having to face this.

[kpjpmom]

Well, I made it so far through radiation : So far it has been very easy. Fatigue just being a issue in the evening. Play time with the grandsons has to wait. Living while dying: dying by degrees. That would be my book title. We do have advantages, in that we get to plan our services,state what we want, pick a song or two that we like. It is just hard........
Pain has been the issue that we have had to stay on top of the most. It seems that pain meds take so long to get into your stystm, that you really must stay focused or have a alarm to adminstre the meds. I find that I just have to have one thing each day that I must look forward to that day. If that is a flower, a walk outside, cooking something I had not before, reading a good book, eating out with a friend, having a friend over to play a game ect.

[kaydee]

Just diagnosed as stage for Feb. 2015. Having a reaction to chemo. I am on 5FU, Oxaloplatin, and leucovorin. First round of chemo, no side effects except cold sensitivity. 2nd round about two hours after treatment ended ran a fever of 103 and was hospitalized. Third round fever of 104 and hospitalized. Dr. said minor bladder infection but leaning to chemo reaction. I am on the pump for the 5FU which has to be turned off as soon as the fever starts. How do they know which drug is causing the reaction? I feel so overwhelmed and don't know what questions to ask and I feel like I'm uninformed about the entire situation. Any advice would be greatly appreciated.

[Sophy]

Just sending my love to the stage 4 and recurrent fellow members.

We haven't used this thread much recently to share our treatment and emotions but I know many of us are still holding on and new people are joining us so maybe we could share our experiences of current treatments and how we are coping with them.

Love from

Sophy

[Mlanier]

Hi Dianne,

I'm Mitzi, 51, stage 4, mets to liver, 04/14, colon resection, liver resection, folofox and folfiri so far. I was so glad to read your BBI 503 post. I met Doc Edenfield Monday. I start this trial next week. I'm in NC, about 5.5 hours from Greenville. I see you are here in NC too. I hope all is going well with you, and I wonder could you tell me about the experience with this drug.

Thanks so much and God bless,
Mitzi

[scottg]

Still here after 9 years!! diag 2006 stage 4 spread to liver,abdomine ,small intestine ,and more,,2 years chemo and surgeries,,,2 HIPEC surgeries,,considered cured,,Like going to war on cancer,,,Will always have the bond with my fellow cancer troops,,Cand believe i am alive and cant believe there arent better drugs or alternatives by now,,,We should start spending some of that raised money on the people aflicted as well as on the promise of a cure,,

[jillbugs4110]

Scott when you say abdominal is it peri? How was hipec?

[Robinf]

Scott, thank you so much for posting your update. It was just what I needed to hear right about now!

I was diagnosed stage 4 Sept 2014, had primary tumor removed as well. I wrapped up my 12 rounds of FOLFOX in April 2015, had HIPEC in May - surgeon removed all cancer he could see (which was more than expected based on scans and CEA) so the thought was yea, good news.

Unfortunately the beast rained on my parade, and my ct scan from this last Monday showed a coupke if spits on my liver and 3 in the peritoneum. A total shock as I'd had another ct just 3 weeks earlier because of a small infection from the surgery.

I've been feeling particularly hopeless this week, but knowing of your outcome confirms that even after this gut punch ther is still reason to hope and be positive of a cure.

Thanks!

Robin

[zig_c]

I have a question that I've never asked my doctors. I was diagnosed stage 3. At my 6 month post chemo scan I had lung met - a single spot that was resected. I then had more chemo and just had my 6 month post chemo scan for that which was clear. Am I stage 3 still? Or am I now stage 4? Or am I somewhere in between.

My oncologist said to me when explaining what chemo I would have post my lung surgery something like "even though you have advanced cancer, the surgery removed it, so I am going to give you chemo the same way as if it wasn't advanced. You are sort of in a special area where the right treatment pathway isn't that clear". That sort of confused me as to what I am.

Sorry I know that's probably kind of a dumb question. I just never know how exactly to label myself.

[Bev G]

Zig,

Most people don't seem to know this, butt our original stage is NEVER changed, regardless of changes in our situations. You are stage III RECURRENT. Even though you are clinically treated as a stage IV, you're still "stage III". This has been discussed so many times over the years. Gaelen, our departed friend, explained the reasoning the best. If people had their stages changed when a met appeared we would never know the true outcomes for earlier stages of the disease, because all outcomes would have shifted to the "stage IV" group.

I hope this helps a bit. I am going to try to find her years old excellent explanation about this.

Best wishes to you,

Bev

[zig_c]

Thanks Bev

That makes sense to me. Sorry for asking an old question. This is probably an old one too - is the term "advanced" cancer is sort of the umbrella term for stage 4 and recurrent metastatic cancer?

[JDinNC]

I would like to add to Zigs question about advance. Are advance stage and late stage consider the same. Being stage 4, I see the two terms being used all the time.

Thanks..

[Bev G]

Hi all.

I mentioned this informative thread from 2012 yesterday. Our dear OSM found it for me and sent it along. It clears up so many questions that come up over and over again:


viewtopic.php?f=1&t=5366&p=208695#p208695

Thanks again, OSM!

Bev

[Lee]

Hi Dianne,

I'm Mitzi, 51, stage 4, mets to liver, 04/14, colon resection, liver resection, folofox and folfiri so far. I was so glad to read your BBI 503 post. I met Doc Edenfield Monday. I start this trial next week. I'm in NC, about 5.5 hours from Greenville. I see you are here in NC too. I hope all is going well with you, and I wonder could you tell me about the experience with this drug.

Thanks so much and God bless,
Mitzi

Hi Mitzi,

I don't normally post her but thought I would welcome Mitzi.

I'm also going to ask Mitzi to intro herself on the mail board. This thread is not seem from as many people as on the mail board.

So again, welcome Mitzi, and could you repost this on the main board.

Lee

[Momto5boyz]

I got my asap scan scheduled for tomorrow onc (if I read him right)_is checking to see if dvt is caused by the enlargement of my Peri aortic lymph node. I haven't decided if I will do chemo again if the growth is the problem. Like Frenchie there is also the too much radiation thing going on, scan was set for June. I need to ask if anyone has gotten financial help for the price of lovenox.... Even the generic is over 600 out of pocket month. I have a bit of savings but am burning through it rapidly.
Thanks for listening.
Pollo 65

Try PAN.. it's a patient assisted network.
I was able to get my neuprogen shots and some chemo med covered for free. You can search them on-line.