mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[Bev G]

Hello, my friends,

I am copying this from my FB page, as I'm just to tired and depressed to write it all out again. I'm not posting much, but am reading at least this thread here every day. Thinking of and praying for you all.

From FB:


A few friends have asked me privately about Steve, and I appreciate the concern very much. Thought I would post an update since it has been a while.

His doc at Dartmouth is still hoping to get him to a bone marrow transplant, which is the only route to cure for his type and aggressive-nature of lymphoma. The first step in the process is to "mobilize' enough healthy stem cells from his bone marrow, then freeze them until transplant. Close to four weeks ago he got one dose of a very tough chemo, Cytoxan, both to try to keep the cancer at bay and also to help mobilize his stem cells from his marrow. He then got a series of injections of a drug called Neupogen, at first 2 injections a day, then after several days, when it wasn't working, it was increased to five injections a day. Two were given at the hospital each morning (at the crack of dawn (!!!) and three were given by me at night. They also drew his blood most days at the hospital and a couple of times he needed transfusions because his blood counts went very low. This was fairly well expected. However, after 17 days of this, it wound up being a complete failure.

Didn't work at all, except to make him extraordinarily fatigued and cause a big concern about his blood counts. Now, although he's tired, he's feeling much better. He was told to rest for a couple of weeks, then we're going to try the whole thing again (different drug) and hope it works better. We are getting low on options for this. He's had a lot of chemo, and that diminishes the chances for this to work, but we're still hopeful. Just a pretty grueling process for Steve. Warmest thanks for all your well wishes. xoxox

[Guinevere]

Bev, What you didn't say (and I understand why) is that what's grueling for Steve and is grueling for you as well. Maybe not in the same way but you know what I mean so know you're still being prayed for.

Pollo, I'm so thrilled with your scan results! I, too, degenerative disc disease. The onc and I think the deterioration was made worse by the radiation I received before surgery. My mom and one sister has the same thing but, thank God, we just found out that my other sister doesn't. Anyhoo, I've found it can be just as painful as cancer sometimes. Thank God for Tramadol and Dilaudid.

I did something stupid yesterday and have been paying the price for it - I cleaned the bathtub. My middle back has been giving me hell ever since. I was even careful about how I went about it but I guess I wasn't careful enough.

Going to see the Princess and her daddy this afternoon and then on to a visitation for a friend's friend who died of cancer night before last. She's also the daughter of a local minister that has worked a lot with DH. Man! I hate this damned disease!

God bless ~
Gwen

[jeanette57]

thanks all!

George brought me down to earth this morning, he leaked a small bit so have to clean up before I try to garden! Friend coming to help! Hope all of you are well and enjoyed the week.

[jeanette57]

gwen

there is a long wooden handle towel bowl brush that I use just for the tub! I sprinkle baking soda, vinegar and then brush away. long handle makes my back happy! I do not use it for bowl just tub. works great...cost about 3 bucks.

[Mard1012]

Hi all,
I've been on a chemo vacation because of low counts. So yesterday after a month I finally had chemo #9. Gee and I was feeling really good over the weekend. So I sit here with my pump. Neuropathy is not quite as severe as it was. Last round they decreased the 5FU because of hand foot syndrome but they increased it to 100% this time. When they decreased it they stopped the Neulasta and so my counts went down and the substitute Dr didn't want to give me Neulasta or Neupogen. So I waited another week and after much anxiety my counts were up so chemo was finally a go. And Neulasta is starting again. Fingernails are peeling. They are real thin at the bases.

Now if the weather would only improve. Chemo brain just put in approve instead of improve. Upstate NY's winter just won't end. It's cold and I'm so done with it. I want warm weather!

Gwen I understand about the bathtub. We have a jacuzzi tub that is wider and deeper then a normal tub. It is a chore to clean and my back hurts after too. Hope you are feeling better!
Martha

[jeanette57]

Any fish eater out there? Friend wants to bring me a walleye sandwich. I hate samon, ok with Pollock
is walleye strong tasting? not a fish eater in the desert.

[tchan8888]

Well, the maintenance 5FU is no longer effective. After eight treatments, just had a scan this past Tuesday. Today, got the results. The tumors are increasing in size in my lymph nodes. While still not significant, this is the first time the tumors have grown while on chemotherapy. My wife, Bun, is not handling this very well. It's tough, but we have to be prepared to deal with adversity. It is not an easy road, as all of you know.

Next step is to actually give me a one to two month break and then evaluate how aggressive the growth is. Then go back on FOLFIRI and see if that will be effective. Not a good day today. Couldn't do anything else, like working out or anything. Tomorrow, will get back to it and get my head right.

Blessings,

Tom

[skypup]

Tom, I am just so sorry to read your news. No way around it -- it just sucks. You remain a big help to me, both here and in your blog. I'll be sending up prayers for you that the growth isn't aggressive. Enjoy the chemo break as much as you can!

Folks, I am in Houston for my quarterly scan. My CEA has continued to drop, so I plan to talk to onc about 2 things: dropping Avastin (the potential side effects seem too much for the potential gain to me), and considering another clinical trial while my body is relatively strong. He is supposed to have talked to the liver specialists about HAI pump, too.

Blessings to all of you!

[jdepp]

Tom,

I'm sorry to hear that the 5fu isn't keeping things under control anymore. Like you, I had a break to evaluate how fast my cancer was growing when it became clear that xeloda wasn't doing the trick anymore. I hope you can enjoy your mini-break as much as I did. (Like you, I also went to din tai fung.)

Don't forget:

It is how we manage our own imagined expectations and reality that leads to happiness.

All best,

jdepp

[Asterix]

That sucks Tom. We are alike in that I only have distant lymph node mets. I've been on regorafenib since October but it hasn't really helped me. My CEA went down a bit but is now about 500. I'm having a scan next week to see what's going on, and then it's treatment. Not sure what yet. One of the oncologists at the cancer centre I go to has been researching genetic pathways and matching treatments to specific pathways. They are currently testing my lymph node tumours that were removed last May, and my treatment will depend on what they turn up. If nothing jumps out (not all the pathways to cancer cell growth have matched treatments) then I'll probably by on irinocetan (haven't had it yet). I've been off all chemo since April 2013 when I stopped Avastin before by lymph node resection. And I don't think regorafenib did much, so I'm hoping the CT shows lymph node only involvement, which I guess would be sort of good for almost a year without effective treatment. So I'm off all treatment now until mid-April as we are going camping in outback Australia in early April. Treatment can wait unit we get back.

[Guinevere]

Tom, it's so disheartening when we put ourselves through the hell of chemo only to find out that it's not good enough! I'm so very sorry but, hopefully, the break will tell you more about the tumors as weird as that sounds.

After I posted the other day about my bathtub cleaning, we went to Paris to see the Princess and our son. While there, I had two blowouts!!! Just outta the blue! Well, the first time it happened, I pulled my pants back up and went to get my purse which has my emergency ostomy kit in it. Very smugly, I went about cleaning up and replacing the skin barrier and pouch. The second time it happened, I didn't have another skin barrier! So I asked my son for tape - any kind of tape including gaffer's tape or duct tape. He gave me a roll of medical tape they had snagged from the hospital after the Princess was born. I plastered that skin barrier with as much tape as I could and put on a new pouch. (Thank God I had put two pouches in the emergency kit!) Would you believe I had two more pouchfulls while there and had to rush into the house when we got home because I needed to change everything out again??!! Later that night, I was feeling pretty yucky and got to thinking I may be dehydrated from all the diarrhea and started trying to get as much fluid in me as I could so I wouldn't have to go to the hospital. The next morning about 5, I started itching so bad I thought I was might be having an anaphylactic reaction to something. Got up and took Benedryls and then looked all over my body to make sure there were no whelps. Thank God there weren't any! Later, I realized that the near dehydration was probably causing my skin to be more dry than it normally is and that's what was causing the itching.

On a happier note, during the Princess visit, she, once again, awed DH and I with her laughing and just general good temperament. She's just such a wonder to us and such a blessing as well!

Today's the first day of Spring. I hope you're able to find something in the day to remind you that hope, like Spring, is coming ~
Gwen

[jeanette57]

This is a great day. I had the handy man come to fix what the wind broke, he brought fresh cinnamon buns .. oh my god - so good and then UPS delivered a surprise package - 2 large and heavy boxes. Yicks, I was so excited as I did not have a clue. Great gifts.

Spring is here so going out on patio with handy man and ask for his help planting my petunias. I have several and even painted several large pots bright green - oh fun

Gwen, you reminded me I need to put emergency supplies in my purse. Darn forgot I took them out and lost them at the bar (someone will wonder when they open that ziplock.

Well, hope all is well with you guys and I hope today is a blessing to all.

[Guinevere]

Jeanette,
At least someone gets the benefit of my experience. I've put two skin barriers and two pouches in my kit! I just remembered I need to add a handful of baby wipes in there as well. Better go do it while it's on my mind. Now, it will just stay in my mind from to the bathroom and to my purse...

[drebay]

Hi all. I haven't figured out all the lingo here. Diagnosed Stage 4 June 2013 at age 45. Liver and Lymph Nodes affected. Colon resection followed by Folfox. No help as liver tumors grew. Then had the chemo where you take home the pack. Can't remember right now the name. Done with chemo Feb '14. Had PET scan today. If no new tumors are there, then liver surgery. If any anywhere, then back to start.

Debbie

Edited to add: It was Xeloda and Irinotecan

[tchan8888]

Thanks for all of the encouragement Gang! It certainly is a challenge to get my mind right again and appreciate all of your thoughts. Today is better and tomorrow will be even better.

Frankly, it is the deviousness of cancer that gets me. How can a disease get so smart? Also, am not looking forward to Decadron as I don't want the weight gain. Will definitely continue working out. Don't want to have to replace my jeans, a few suits and shirts .....

Blessings,

Tom