linda-z
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Thanks Marion. I just had a chance to check back on-line and saw your post. I never thought about the protein powders! Tremendous idea for getting more. And of course, I wasn’t thinking about checking for previous posts on here. Thanks again. Yes, you mentioned chemo brain. That’s what I would call it.
That’s why I’m on this website! Thank you so much. I’ll be checking.
Linda Z.
Jill,
I just saw your post about insurance here! Way to go! Thanks for your work in Oklahoma where it may also impact other states everywhere. Could we get a little continuity around here with this thing? (insurance and the treatment of it?)
Linda Z.
Hi Jill,
I have BCBS “HMO” that HAS paid for a PET scan. That might make the difference. Do you have a PPO or an HMO? My BCBS is in Illinois also. That ALSO may make a difference. My insurance has been pretty good “so far” with covering all the tests that I’ve had. Fortunately, I had the insurance coverage BEFORE my diagnosis as I’ve heard that getting coverage after a diagnosis can be difficult.
Keep up the fight for coverage. Good luck.
Linda Z.
anp:
I’m a little later in posting here, but thought I would let you know my journey so far. I had liver resection surgery April 1, 2009, with subsequent chemotherapy 3 months after recovery. My first CT scans were clear and the doctors said they were confident they had a “clear margin” around all cancer. I’ve heard that a lot on this site.
My subsequent scan a few months later showed a recurrent spot where a tumor had been burned (again saying that it was burned with a clear margin around it). I am currently undergiong my second round of chemotherapy in hopes to reduce the tumor and have surgery again.
I would say that by reading so many of the posts here, that recurrence is very common. This disease is horrible and is not very predictable. However, I have also seen success stories. We can only hope that we will all experience a little bit of those success stories along the way until we can finally get rid of this cancer.
Early detection and frequent follow-ups can help keep up on it.
Good luck.
Linda Z.
Rick,
I agree with Pam…..your posts on this site about how you feel about your family and what you want to leave them with are tremendously wonderful!! You might make copies of them for them so they will know your thoughts at this time in your fight. Put them away in a “Book of Remembrance” for them for later. (MUCH MUCH later because you’re going to be around for a long while right?) Can’t hurt get started though.
Linda Z.
Hi there Nancy. Welcome to the site here. I am a fairly new newcomer to the site, but have received much support and a LOT of information to work on.
I was also on Gemzar/Cisplatin for 3 months and tolerated it VERY well. The nurses at the infusion center where I went were wonderful and made sure that you got your anti-nausea meds first and if you were experiencing ANY nausea, they suggested more meds. I took Aloxi during infusion, as well as Emend, then for 3 days after took Emend, Decadron and Zofran. Those usually worked and I was fine for the rest of the week. If that didn’t work, I was given Compazine just in case.
I am now taking Xeloda chemo pills and have not had to taken any anti-nausea meds.
Most importantly, don’t worry about any of the side effects, but watch your symptoms and take care of yourself, telling your doctor anything that changes. They are there for you and no reason why you need to suffer even further. The biggest part is watching your white blood count and the fatigue that you may get.
Post any side-effects you have here (in the side-effects section), and you can get suggestions for help.
Good luck,
Linda Z.
Also wanted to chime in here on the anti-nausea meds. I was given Amoxil by IV when I received chemo infusion, then Emend for 2 days combined with Dexamethasone (Decadron) and Ondasteron (Zofran) with Prochlorperazine (Compazine) if I still needed it. I was given those for Gemzar / Cisplatin and the Oxaliplatin infusions. I never had any nausea problems and I am now taking Xeloda and have not had to take anything for nausea. The Amoxil made me sleepy, but the others did not. I was told there is a lot they can give you to help nausea. Don’t stop asking for more help.
Linda
Hi all,
Just a quick comment about possible hair loss! I used to be the person that never wanted to cut my hair. I had hair below shoulder length and even though it wasn’t a thick head of hair, I appreciated what I had and was protective of it (before CC). My brothers helped me to see things in more perspective. I was more afraid of the change. It wasn’t losing the hair that bothered me as much as the change and the negative aspects of hair loss. When I thought I was losing my hair, I went to get a wig as soon as I could so I wouldn’t be “without”. My brothers helped me see it as an adventure, and asked that I experiment with the look. Get something that was a little more out of the “box” for me. To try out my “daring” side and who knows, I might find something that I really, really wanted to try (new color, new style, whatever).
I only wore the wig I picked out a few times. I have 2″ new pieces of hair all over as what thinned grows back. However, I know at any time with the new chemo. I could again begin to lose it or lose it all. I’m prepared with that wig again, and don’t look to it now as a negative thing. I’ve become more daring and experimental! My husband actually made suggestions on colors too! He joked it would be nice to have a “new red-head on his arm” (I’m dark blond).
Get out there! Experiment! Be your daring self. After all we are going through, shouldn’t we be able to make ourselves feel better in this way too! Live it up.
Linda
Thanks all, for the replies.
Yesterday, I felt the worst. My energy level was way down, shaky, constipated (typical of chemo). So I thought my white blood count had dropped really low. I went in for a blood test and all was fine! Last night I got lots of sleep and today I am having no flushing, less shaky and less “abnormal”. Don’t know what it was (or just the irregularity getting to me), but the side effects I have now are VERY tolerable. I expect to be tired, and I have just a slight numbness in the fingers, and more irregular the opposite way now, but manageable. I prefer these symptoms to the IV chemo infusion. The only thing is I take Xeloda every day for 14 days so there is no dissipating time until then, like the chemo infusion that is done once a week and by the end of the week, I was feeling a little perkier. (at least the first week).
All in the name of kicking CC to the curb! Whatever it takes. Thanks again. By the way, I did mention the face flushing to my chemo nurses and they had not heard of it yet. I also had a swallowing problem while I was on Gemzar / Cisplatin that they said wasn’t a side-effect. Now I see that it IS a side-effect of the Oxaliplatin. Of course, I have things happen that aren’t quite the norm. My brother calls me unique….unique symptoms, unique cancer, unique personality! Well that’s his opinion. Brothers can be that way. (Wouldn’t trade him for the world.)
Katja, I actually received a sample of “Udderly Smooth” with my Xeloda kit. It is marvelous! Mine just says “Udderly Smooth Udder Cream” and doesn’t designate hands or feet. I use it many times daily and it has helped. I’m also a secretary and handle papers constantly at work, which robs your hands of moisture and can cause my fingers to crack in the colder weather. Udderly Smooth really helps. And it soaks in quickly, not leaving an oily residue on your hands for a long time.
Linda
Margaret,
Thanks for the great “recording” hint! My sister-in-law went with me to my appointments when my husband couldn’t make it and took notes. BUT this is a much more thorough way to pass on information. And no room for mis-interpretation on the note-taker.
Thanks again. I will use this in the future if need be.
Linda
Hans and Kris,
Just a little setback and change in strategy that’s all. Maybe this was meant to be so the surgery (next time) WILL work.
All my best.
Linda
Melissa,
My heartfelt sympathies to you and and your family for the loss of your mum. Take care and may God bless you.
Rick,
You certainly have it all together here! I think you “get it” in that what you may decide to leave your family is not to hold them back, or to be a constant reminder of sadness, but to uplift them, to reaffirm your love for them and not wanting to leave them without important things that may not have been said. I thought a long time about what I would do and again what I would say to you in reply. Ultimately it is your decision, but hearing people on both sides of this issue express how they would have loved to receive something from their loved ones, makes me even more determined that this is right for me.
You are a young parent and your thoughts are going to be a little different since your wife is young. I am 53 with a 5 year old son. I knew that when I had fertility treatments to conceive him, that I may not be around when he was my age. I am also the family historian, so after my son was born, I began writing notes about what I wanted to tell him. This was before I was diagnosed with this awful illness, so it was more an uplifting thing to pass on my “history”. I remembered the movie “Time in a Bottle” where a woman was very ill and began leaving her child audio tapes of things she wanted to “be there for” and might not be. I also remembered an “Eight is Enough” episode (I’m showing my age here!) where the mother has passed away and the step-mother (or one of the children) had found a Christmas present purchased and hidden away by the mother some time before.
I have a friend who’s mother created a video for a granddaughter for school talking about her growing up and a little about her life. It was created as a school project. But when the mother died, my girlfriend gained great solice in being able to hear her mother’s voice again, and felt that she was still with her. My father-in-law passed away in suddenly in Oct 2008, and the family created a video with many, many pictures of him throughout the years (and some we had never seen before when he was young) and set it to music. My husband has used that video over and over to be able to get past his father’s passing. Now it is a source of happiness when he watches it to see how his father lived and the things that were important to him.
All this still doesn’t say that I want to give up. When I beat this cancer, I fully intend to still give my son what I have created. Whether that be in trips that we take together, times that we spend together, and scrapbooks, cards that I can given him, or videos I’ve made. I know what it is like as a genealogist to find one small incling of your ancestors left behind. Even if that is only a signature. It brings you even closer.
