mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[cjsho]

Sorry to hear the way things are going, Jacekica. Wishing you the love of family and freedom from pain.

Chris

[sidcharise]

Anyone attending the Fighting a Smarter War on Colorectal Cancer summit in DC?

[Sophy]

Dear Jaekika,

thinking of you and hoping that you are comfortable and with pain under control.

With warm hugs from a sunny spring evening in New Zealand

Soohy

[skypup]

Are any of you still here? I feel lost on the forum lately and miss having the old crew to discuss hard things with.

[Sophy]

Hi Sky

Still here but feeling very down after Gwen's death. Not that she would be glad we are sad, she would want us to carry on living and enjoying life, of course. So I try to remember to be grateful that I have known the wonderful people here rather than complaining that we couldn't keep them here forever.

Well I am on an extra week break between my ADAPT cycles to allow my hands and feet to heal up. I would never have believed how many times a day children stand on your feet. Wouldn't have bothered me before but now with icky pus painful toenails I end up screeching each time it happens.

Good thing is that xeloda dose dropped again, from 2000mg twice daily to 1500mg and now down to 1000 mg starting next week. With that I think I have a chance of completing the three years if I am around that long.

And where is Jaekica now? I hope that she is pain free wherever she is.

Love to you all

Sophy

[skypup]

Hi Sophy, good to hear from you. I have infected toenails, too, and was just getting a bit concerned. What are you doing for them?
Jacekica is now in a hospital so she has access to adequate pain meds, but no internet. I am intending to write to her and will tell her you asked after her.
Thanks for writing back. (((hugs)))

[Asterix]

Hi Skypup,
I'm still here, but have noticed the same thing about lack of activity. I'm probably guilty of contributing to that lack of activity though. I've been in hospital due to back pain for the last 6 weeks. It was slowly building from spine mets bt seemed to take off quite badly. I was given a week at best due to the sudden inrease in pain, but that was 6 weeks ago. CEA rose to ~4000 or so. It has since stabilised and so had the pain with control, and I'm now on irinotecan and 5-FU every week 4 weeks, then 2 weeks off (sitting at week 2 of first cycle so far). I stay in hospital most nights under palliative care team, but get home most days and the odd overnight stay at home. The main problem at home is sleepingin my normal bed is difficult due to back pain - I have to sleep in a recliner. We have managed to order an ex-demo hospital bed like I have at the hospital and that should allow me to go home. I will probably do that soon. Hopefully I will respond to the irinotecan (never had it before) which will shrink whatever is causing the pain so I can get off some of these pain killers.

[Sharona]

I have been on and thinking of all of you and wondering how everyone was doing. Got some news on Thursday that was tough. That night I logged on, was thrilled to see Skypups note and wrote a long post because I felt a need to share with you. Somehow I lost it. I am pasting my caringbridge post from this morning.
Another anniversary

I have asked the kids to let me post this time to let you know what was going on. As you know, two years ago today our lives changed forever when I was diagnosed with metastatic rectal cancer which had spread to my lungs, liver, and brain. What a journey it has been! The prayers, love, and support of family and friends has been so uplifting and overwhelming. I could not have made it thus far without all of you. I have learned to take each day at a time and appreciate the little things, learning to accept limitations, develop patience, especially with myself (still working on this!)

Last week we decided to begin some pallative radiation to help relieve some pesky symptoms in the abdominal area The week was spent working on "the plan" and I had my first treatment Friday. On Thursday, we went to Brookwood for my three month brain scan and follow up. We were prepared learn of a possible new lesion, but were surprised to be told that the existing tumors have grown and that there are "multiple new lesions". Whole brain radiation, pallative, is recommended to help control symptoms. We will see the radiation oncologist here in Anniston tomorrow to work on "a plan" for this treatment. Not sure how the details will work out, but hospice will be stepping in.

There will be a slight break in my treatment so that I can fulfill another wish on my bucket list. I will be taking the four oldest grandkids to New York for a few days In December. Stephanie has been busy arranging our itinerary, many thanks to her. She has even been able to get tickets to Lion King during this busy season! The doctors are very supportive of this as long as I take other adults. Andrew and Stephanie will be with us. Not sure who is more excited, me or the kids. Please say a prayer for good weather!



I have known that this day was coming and am so grateful that I have had the past two years that we did not expect at the beginning of this journey. I am at peace and know that, as always, things are in God's hands. Please continue to keep us all in your prayers and know that I love and appreciate each of you. The kids will continue to keep you updated.

Have a very blessed Thanksgiving!

[kpjpmom]

Skypup,
I am still here. I check the board frequently, but do not post that often. I feel the loss of our dear friends so much. I fear when I come on someone else will be gone. Since Kathyrn, it seems that we had such a number of our friends go on. I miss Gwen's posts so much! I know I should post more often, but I often feel guilty over how well I am doing right now and others are struggling. I am glad to see that you still post and I am always glad to read your updates. Take care and I hope you had a good time on your trip. Have a blessed Thanksgiving.
KPJPMOM

[pollo65]

Sky, I am still around but haven't gotten over Gwen's passing. I think about everyone and check in every day. I pray for your good health and think of y'all every day.
Pollo 65

[Sophy]

Glad to see people coming back to this thread but sorry to see the increasing difficulties so many of us are facing.

Sky, my feet are recovering this week. I put antibiotic cream on the toenails and my doctor gave me oral antibiotics to take if things got worse. Ii find that soaking my feet and hands in spa or bath for about an hour and then putting on vaseline helps as well. I don't find the water based creams work as well as plain old vaseline with socks on all the time and gloves as well at night. And I have been training my kids and dog not to stand on my feet.

I have an ultrasound of my liver tomorrow as I have been getting a dull ache in my lower right side. No breakfast or coffee to help calm me down but at least it is at 8.45, just after I have dropped the kids at school so I should be having breakfast by 9.30 and the ultrasound operators usually give a running commentary of what they are seeing so there isn't the waiting for results like a CT. I always think back to the time when I used to have my pregnancy ultrasounds in the same room. Those pictures of tiny legs and heads were a lot more interesting than liver and kidney images.

Sending hugs to everyone

Sophy

[Bev G]

Hello all.

Paul, I'm so sad to hear all that is going on with you, and Sharona, you too. What a nasty, nasty disease.

Things are so different on the board now. I have never experienced this here. I feel like our losses finally reached a critical mass that I am not finding myself able to come back from. I don't mean by that that each individual loss of a friend over the years hasn't been breathtakingly hard and painful...but lately it's just been too much. Somehow it seems that so much of the skeleton of our group is gone. Kathryn, Ashlee, Gwen, dear Marco and on and on and on and on.

There have been some really silly things getting posted and while I'll admit it is likely my mood that makes me hate them, I hate them...I purely love that we have stuff to laugh about sometimes, but the number of irrelevant posts lately has been distracting and causes me to feel so alienated from the board. I know...I don't have to read them, and I don't.

I wish we would hear from Tom. And, I'm worried about Ray.

I miss our voices of wisdom and authority. When I try to reach in to think of something to post, some way to help, I find my fuel guage continues to register "empty". I have not bounced back from my recent hospitalization, and not fully recovered from my post-coma "brain fog". The fact that my brain is atrophying causes me fear and a new distrust of my body.

In two weeks I will reach my 5 year post diagnosis mark. I am so grateful. I never thought it would happen so I never even tried to imagine how I might be at this point if I made it. I'm really in deplorable condition, and if the trajectory continues, it's just one more thing I'll try not to think about.

I love you all.

Bev

[ConnieSPK]

I'm still here, too, just haven't been posting much. I pretty much feel like the others with so much loss this year, I think I've been avoiding visiting too much. Anyway, got some good new yesterday, CT showed SBRT scar tissue, but no new spots anywhere. I managed to stay off chemo for a year now with the SBRT this past summer, so counting my blessings. Wishing the best to everyone.

Connie K.

[Cb75]

I'm around. Skypup's post hit my heart. It can be so lonely. I know that I don't post much on this thread, but I do check in to see how everyone is doing. I've had a hard time with all of the bad news here and elsewhere. It's hard to see the beauty in life, when there is so much suffering. The longer I am at this, the harder life gets. My heart aches...

I'm going on eight months of FOLFIRI and Avastin. It scares me how fast the time has flown by. I am now facing another scan in January and some choices about my treatment going forward after that scan. For now, two more rounds, a break, a scan, then????

I'm going to try and pop in on this thread more often. I'm here for anyone who needs someone...

cb <3

[nick49]

Hi to all stage 4 patients,
Just wanted to wish all the best to those celebrating Thanksgiving Holiday!
I managed to spend a lot of time in the US over the years, mostly on business, I always enjoyed my trips and have many fond memories and lots of smiles.
I suppose I'm feeling a little in limbo the past few weeks.don't know why....I'm on constant chemo...Folfiri and Zaltrap and have just hit the 15 month mark post diagnosis! My Onc says I'm doing really well, better than expected...

Maybe we all go through ups and downs...anyway...I'm sure I will shrug it off...as people always tell me..you look well..

I do know people only mean well...but those in an incurable situation can probably understand what I'm saying.

Take care all
Nick