Peroll

Thank you Peroll my husband has never acted like this before but then he has not had cancer before. I notice a change in him and did say something about it to our primary doctor and he did prescribe some meds but they turned him into a zombie with just a blank stare all of the time and I told him to stop taking them and called the doctor who told me to have him stop taking them I told the doctor I had already taken him off of them. Next appointment ill mention it again, maybe there is something else he can try. You had depression too? Sorry I tend to ramble on sometimes, this my husband will agree on but I get to talking or in this case writing, but I find it so helpful to talk to other people who have gone thru these similar unfortunate circumstances to find out how they to fought to live and not only that but thrive and just take it one day at a time. When he was first diagnosed I would take half days at a time or maybe an hour, you get my drift. But there is life after a cancer diagnosis, we learn how precious life is and to appreciate every single day, sorry rambling again, lol. Thank you again and stay strong!

Peroll, I read your story and wanted to reach out to you. My name is Lisa and although our cancers differ we are stage 4. I am having such a hard time with chemo and knowing I am a 4 with no outlook for radiation or surgery. Too many of my nodes are involved for radiation or surgery. The main tumor is becoming more and more uncomfortable. You have been through so much, you were fortunate for surgery/radiation/chemo and good docs. I feel so hopeless without being able to have such an arsenal for a fight. I hope you are feeling well today. Are you currently in remission?

Hi Peroll, thanks for the message. Bill 's sore feet are the result of the chemo. I have found a drug on this site that we can ask the oncologist about on our next visit. Great site wish I'd found it sooner!

Hi Peroll,
Hope your doing well.

Do you know anything about this question? A valve?

https://www.whatnext.com/questions/ileocecal-valve

Peroll, thanks for the reply as always comprehens ve.
ad vse taken m nd at ease.
Sorry on 's on my keyboard today.

Hi Peroll,

I read your thoughtful response to MeggyinSF and after responding to her myself, I thought I would start following you and make a post to say, "Hi."

Personally, I was diagnosed Stage IV Colon Cancer with microscopic mets to omentum and two lymph nodes in July 2012. Fighting the disease hard and hoping to live as long as possible with a goal of a full life span. Looking at long-term survivors like you and others uplifts the spirit.

After 12 rounds of FOLFOX last year and a five round cycle of stereotactic radiation to knock out a lymph node, I'm now on 1000mg of Xeloda twice a day on a two weeks one and one week off cycle with biweekly infusions of 500mg of Avastin. Next scan is on March 16 with results on March 20. We'll see how things are going at that point.

Best to you,
Rick

Hi Peroll, did you ever meet a guy named Bill Muehlberger? He taught the astronauts geology prior to the moon landings and was involved with Skylab. He was a big guy with a loud voice. He was my thesis advisor at Texas.

Peroll, thank you so much for your precise insight.
I just received your post and will take some time to digest it to understand more fully how it directly affects me.
I will have to get home later tonight to check my paper notes.
Again, thank you.

Thanks for answering my question. I think of them often of course most seem to fall out of my head before I get them asked lol. I hear some folks call that chemo brain but I couldn't remember crap before lol

Hey Fella, how you getting along? Side effects getting any better?

Hi Peroll, just stopping by to say hello. Hope the side effects are getting less and less annoying with the new pills you've been taking. You are in my thoughts. You have lots of friends here so keep us posted about your progress when you are able to. Hugs.

Hey Peroll, I read your wife's post regarding the new treatment that you are on. I did some research on the drug with the FDA and it really is a big gun with some unforgiving side effects. I am worried about you my friend and if there is anything that I can do for you just say the word. I noticed that a few people stated their side effects got better as time went on. I hope this post finds you in better health. Let me know if you need anything and I hope you got baseline LFT before you started this drug. Stay strong and feel better. You are in my thoughts and heavy on my mind. Im here if you need anything, Carm.

Thank you for your thoughtful and helpful response. I always appreciate knowing I'm not alone in this. Your post helped me to calm down and realize its going to take time.

I got into woodworking big about 10 years ago. I'm in the landscaping business and a customer said she needed lots of landscaping done but didn't have much money, but if someone would buy her late husbands woodworking tools, she could afford something. Well, she had an 8,000.00 project to do, and I thought, I don't know what good I can do for you buy buying a skill saw and a couple screw drivers, but show me what you have.

She rolled open the big drive through door to his shop, and the angels started to sing, and a big sun rose over the shop. It was full of Delta commercial quality equipment. Table saw, with outfeed tables, roller extension, biesemyer fence, scroll saw, bandsaw, planer, drill press, lots and lots of accessories. And a stack of lumber to boot.

I built a set of cabinets for our house I was building at the time as my first project. I believe in starting BIG!!~ Since then I love it. Build lots of stuff. Just don't have enough time.

I have over 4000 board ft. of REd Oak, White Oak, Maple, lumber from trees I have taken out of customer's lawns. I will cut up the logs, and after I get about 40 logs have a portable saw come in and cut them up.

I will probably never run out of wood.

Thank you so much for your answer, and for "being here" for all of us! I like what you have posted on your wall, "Living with cancer as a chronic illness" I can do that. You're right; I'm not ready to quit. My gallbladder cancer was caught early just by a fluke. I had breast cancer, lumpectomy, chemo and radiation 7 years ago, and been getting chemo marker tests yearly for that. 9 months ago the breast cancer tumor marker came up just a little elevated (from a normal 20-22 to 45). A CT scan was done which showed suspicious lesions in gallbladder, lymph nodes, and liver. We were thinking a recurrence of breast cancer, but the liver biopsy showed it was new gallbladder cancer. I had no symptoms, no pain, no jaundice, never had gall stones, nothing to indicate anything was wrong inside! And I still feel "normal" after 12 sessions of chemo. The chemo wasn't as bad as the first time around because I knew what to expect. I'm glad it's over for now, but I can handle more if need be to get a remission.

Fortunately we have an excellent medical facility here in Kalispell, the only surgical oncologist in the state that does the kind of surgery I might need (who has already done very technical surgery on both my husband and me), and an excellent oncologist who we trust implicitly. Our daughter and only grandchild live two blocks away, and she works at the hospital in the lab.; so we are very well taken care of there. Our surgeon told me that if there was cancer left after they biopsy that lymph node he's concerned about (they're going to do the biopsy with an endoscope that will go down and can take the biopsy without any surgery or invasive procedure - another Dr. who is the only one in the state doing such work), that even if I had no further treatment I could expect to live well at least another year. After what you've said, I feel that I probably will be able to achieve my goal of being here to see my 5 year old grandson enter college 13 years from now...

My Mother's favorite hymn was, "In the garden" which has the refrain "and He walks with me, and He talks with me, and He tells me I am His own, and the joy we share as we tarry there no other has ever known"... I often go walking around my home enjoying each season, and I will continue to do that with Him...

Okay, I've got a picture up. The dogs weren't exactly cooperating.

Watson, and his buddy Sherlock, are both rescue/shelter dogs as well. Sherlock is the alpha. He's a shepard mix. I say they look like Basil Rathbone and Nigel Bruce.

Your Lucy (the yellow dog I presume) looks a lot like my Watson. Same color and ears--hard to tell about the rest. Watson is usually described as a Shar Pei mix.

Thank you for your responce earlier; I reposted the question in full! All the best to you!

Come Monday, it'll be alright.

I hope your procedure went smoothly and you're on the mend!

Give them Heck today, Peroll!

Good to have a chief engineer on board the whatnext. I was hoping there was a gee whiz standard way the radiologists measure tumors. I wasn't expecting that they just hold a ruler up to measure the diameter and that's it. I have been following those measurements, just to get some sort of clue where dad's headed. Thanks for your great descripton.

Mr. Peroll: You say that stage IV means that the cancer has had enough time to set up house in another location. Namely my lymph node. In what ways I wonder will this change things. An Oncologist question no doubt. I was sure hoping for a different outcome than this, but, I guess we can't always pick and chose our own battles after all can we? I think we'll have to agree to disagree on which is easier, Chemo or Radiation, although I've not been permitted to begin radiation until Monday, I think the radiation burns to my throat and mouth will be so much worse then the Chemo. I could be wrong, but I was burnt pretty badly while working in St. Louis at a Die Casting Co, which dealt in the handling, monitoring and maintaining of molten metals. I got burned pretty good with a one ton stack of cold wet metal falling into a 1600 degree reverb furnace and it took forever to heal, not to mention how long it took to stop hurting.
All I can say is that I hope I'm wrong with what I'm thinking and that this doesn't change to much of the original plan. Another thing you mentioned, about having it biopsied, My guess would be that they'd "put me under" to get a good sample of it, now the last 2 times they "put me under" the next 4 or 5 days were so beyond pleasant that I was not sure I'd survive, and since each one was progressively worse, I don't know if I want to make it a third time charm or not. Is there not another way to determine if it is or not?

Yeah, Peroll--this rain is not fun--so we've already made some plans for southern California right after I finish the worst of my chemo! I miss the sun already! (wimper wimper wimper...)

thanks for the feedback on the status update not including emails, I actually knew better than that, I will put a fix in for it.

Thanks
Greg

Thank you for your answer. Fortunately I am not on chemo or any other treatment. You've endured a hard and arduous, long journey and I wish you well.

I would love to share my information with you christinapitts10@yahoo.com and please also have your wife contact me I need all the support I can. I have alot of coworker support but no family. They told my husband Friday he might have 2 months his is still taking chemo pill zelboraf but he looks so strong and healthy. I told him anything is possible and we have a 6 year old . Thaks so much christina

Not only have I gotten “unsolicited” advice,” but, have been told many a horror stories about peoples journey through cancer and their treatments as if they already knew all the facts of my situation when I don’t even know what’s what yet. “ARGH!!!” People really can get weird when they discover another has cancer. I've always said that unless a person has had to live with chronic pain there is just no way they could possibly understand what life is like for me. I’m slowly discovering the same holds true with cancer.
It’s just so beyond me how these people can believe they know what’s best for me and the “proper” way to proceed with it when the worst pain they have ever suffered may have been a broken bone or something of that nature. I do have one friend who is also a chronic pain patient, who “claims” to understand how I feel, but continues telling me what “he” would do in my situation even though his pain is pretty well controlled and he’s been divorced and his kids nor ex want anything to do with him. Just because something is right for him (or anyone else) does not make it right for me. Our situations are completely totally different, as I DO have a close tight knit family who does care they just cannot understand why I feel the way I do. I know and understand that they love me and want me in their lives, really I do, but it does not relieve the pain the confusion or the anxiety and apprehension of what I will be faced with. The lack of knowledge has to be the worst, which is one of the reasons I came here.
I’ve yet to make “ANY” decisions concerning treatment or non-treatment. I’m still in the information gathering stage as I was just informed approx 1 week ago by my newly acquired oncologist that I have seriously got a “bad” case. Tues for the first time I meet with the radiation doc and Wednesday I meet with my chemo doc and see my oncologist for my second actual visit, not counting the surgery I went through for the purpose of diagnosis. Although over the years I've thought/wondered/dreamed about what I would do if confronted with a life or death situation.
Yes, I realize I have a serious “communication problem” with my pain doc. I talk, he ‘pretends’ to listen, then dismisses me like my concerns don’t count. I’d absolutely love to fire him, but cannot get a new pain doc w/o first seeing an ortho-surgeon. Which I did with devastating results as he wants to do a couple of radical new surgeries to my spine which I did not/do not wish to pursue. I feel I've been the genie pig for enough surgeons already.
I only wish more people including Drs would/could understand that Quality of life is just as important, if not more important then quantity of life, as I can honestly say that life without “quality” is no life at all. Being the next best thing to a ‘shut-in’ since my pain doc cut my morphine RX by 90% is no kind of life at all. The additional pain and lack of sleep as well as other problematic symptoms this cancer is causing makes it that much worse.
I sincerely thank you and everyone else for your input, all who have responded to my questions so far have been really helpful.

thank you for the answer you posted.. it is what we think also. we must wait and see.