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Sorry Porter that you weren’t able to get treatment today. It’s not unusual being you’re in the middle of your sixth cycle. It can get you down but please remember it’s just a blip right now. Did they give you anything to boost your white count or do they want to see if they’ll come up on their own?
I had that issue last year when I was on gemcitabine by itself. My counts went so low I had to miss treatment a couple times. I’m on gem/cis right now and I worry that it’s going to happen again. I’m scheduled for my third treatment this Friday and am already worrying my counts will be too low to get treatment. I guess that’s the nature of the beast with this disease we’re fighting.
It sounds like you’ve been doing fine so try to stay positive and know that there’s nothing you could have done to boost your white cell count. The strong chemo drugs do that and you can’t do anything about it.
Please know I will keep you in my prayers, praying that you will stay upbeat and get back on schedule next time you’re due for treatment.
Peace & Love,
MaryPercy,
Thanks for the additional info. I always appreciate your input and comments.
Love & Peace,
MaryHi Caroline,
I don’t mind sharing on the post. Just to be clear…when I first started the 5mg oxycodone – it was to take as needed. If I only felt I needed one a day that was fine. If there were days I felt I didn’t need it at all that was fine too. If I needed it more, that was fine too as long as I took it betweem the 4-6 hours in between. So when you take it, don’t take it again until at least four hours have passed. Of course, all this should be clarified with your mom’s doctor along with the question about cutting the pill for half a dose. Some pills you can cut others you can’t. Only your mom’s doctor can say what’s best for her.
I am now on more pain meds due to the growth of my tumors and their locations where they’re pressing on other organs and causing more pain. I started a new chemo regimen on 11/8 and am hoping this will help shrink the tumors and therefore help the pain. I am taking 30mg of OxyContin twice a day – 12 hours apart. In between, I can still take the 5mg oxycodone if I feel I need it. Some days I do but most days lately I do fine with the 30mg OxyContin 8am and 8pm.
Hope this helps.
Mary
Thanks Percy.
I’ve only had two rounds of gem/cis but am hoping I can tolerate it for at least six rounds, when the doctor will do another CT scan.
Can you advise me as to the side effects that make it difficult to tolerate gem/cis? So far I’ve only had the issue of the swollen legs due to the hydration for the cisplatin.
Thanks,
MaryHi Patricia,
I’m doing pretty good except for the swelling in my legs. That’s from all the hydration they give you to protect your kidneys from the cisplatin. I took it easy this weekend and kept my legs up a lot so it wasn’t as bad as after my first treatment of gem/cis. I was up Saturday morning doing housework and then went out to run errands after my first treatment. It wasn’t until I sat down about 10pm that evening that I noticed how swollen my legs were – right up to my thighs!!! I had to call the doctor on call for my ONC and was told to elevate and stay off my feet all day Sunday. I did see improvement so that’s why I did that proactively this second treatment.
Hope you’re doing well.
Love & Peace,
MaryCaroline,
When I first started experiencing pain, my doctor put me on oxycodone, 5mg every 4-6 hours as needed. I, too, was reluctant to take it and felt I could deal with the pain. The doctor explained to me that if I let the pain get out of control, it makes it more difficult to manage. Also, the pain saps a lot of energy from you which you don’t need when dealing with this disease. It still took me awhile to get use to taking the oxycodone but I did.
I didn’t have this issue with the 5mg oxycodone, but some people have an issue with constipation. So if your mom decides to take it, she needs to talk to her doctor about that possibility and maybe start a regimen of laxatives/stool softeners with the pain med.
Love & Peace,
MaryThanks Percy. This is a very interesting article with the possibility of seeing results up to a year. Also can be not so good results too. My SBRT that I had in May of this year – 5 treatments – does not seem to have helped me but I’m wondering if it could possibly start working later on. Right now, due to significant tumor growth in my liver and lymph nodes around the celiac/hepatic arteries, I’m on gem/cis regimen. Just had my second one this last Friday and I have to tell you the stomach swelling has gone down and I’m feeling much better. Seems surprising with only two treatments but I know what I feel and it’s good!!! Maybe it’s a combination of the chemo and the power of prayer. I do have a lot of people praying for me and I do believe in the power of prayer and positive thinking.
Thanks again for keeping us updated all the time as you go through your own journey with this terrible disease. How are you doing?
Love & Peace,
MaryHolly,
I’m so glad you’re starting to feel better!!! As I mentioned in my reply to you on another post, you truly do inspire me and help me to go on when I think I can’t do it anymore.
Continue to stay strong and keep the faith!!!
Love & Peace,
MaryThanks Holly and Carl for your words of wisdom. Coming from those who have been there and are there now, I truly appreciate it.
Holly, I am hearing all good news about the gem/cis combo and am hoping for the same positive results as others. I only had my second treatment on Friday but the discomfort in my stomach seems to be much better since Friday evening. I don’t know if two treatments can do that but all I know is I’m feeling better and I’ll take that no matter the reason for it!!! The stomach discomfort is from the growth of the tumors in my liver and the lymph nodes in the celiac/hepatic arteries area. Due to the growth, They are all pressing together and on other organs causing the swollen stomach and discomfort. But as I said, as of Friday evening I’m finding it’s not as bad as it has been and for that I’m grateful!!! I will definitely enjoy the sun in Key West in January – can’t wait for the time to arrive!!!
Carl, Emend is actually one of the many pre-meds I get intravenously prior to each chemo. I just had my second treatment on Friday. I didn’t experience nausea the first treatment nor Friday either so I guess the Emend is working. I have a number of other pre-meds, which are mostly anti-allergic meds, because of an allergic reaction I had to Oxaliplatin last year. Since cisplatin is in the same “family” of platin drugs, they decided not to take a chance on another allergic reaction hence the pre- meds. I’ve had both Neulasta and Neupogen shots when my counts went low before but they haven’t given me anything yet on this treatment. But the doctor did mention it when we discussed starting gem/cis. I’ll definitely keep it in mind and ask her about it. My counts were low Friday but I was able to get the treatment and at the end they gave me an iron infusion because my hemoglobin is low. I’ve had that a few times before for the same reason. Once I had to have a blood transfusion but luckily this time it was just the iron infusion.
Thanks again guys for the words of encouragement. You really do inspire me to go on when I think I can’t anymore.
Stay well and enjoy the upcoming holidays!
Peace & Love,
MaryHi Dorien,
Glad the Y90 went well and Kyle seems to be doing well.
I wish you great family time during the holiday period. And a nice break from chemo to help you enjoy the time more!!!
This disease is so overwhelming for everyone involved. My daughter is my caregiver and it just breaks my heart to see what it is doing to her. So I feel for you as the wife/caregiver and also as the mother of your lovely children with Kyle. Not a journey you wanted to take, but was given to you, and you handle it with grace and determination. I wish you peace and lover during this holiday season!
Take care,
MaryYes Caroline, my daughter drives me in for treatment. It can be crazy sometimes but she’s kinda of use to it. Best wishes with your mom. Let me know how she’s doing. You can email me directly if you’d like – marywalsh1@ optonline.net.
Karen, thanks for the warm wishes for my Key West trip. I’m hoping I continue to do well and make this trip.
Peace & Love to both of you.
Mary
Hi Caroline,
Thanks for the info regarding the constipation. I seem to have it under control now but will keep the kale juice idea in case I need it down the road. I like kale but have never juiced with it so I may try that.
Your mom’s road to diagnosis seems a lot like mine. I, too, was first diagnosed with adenocarcinoma unknown primary in August 2011. It wasn’t until March of this year that the tumor in my liver showed on a MRI and I then got the diagnosis of CC, stage IV. I’ve been doing quite well up until a month ago. That’s when the doctor decided to do the CT scan early and discovered that my tumors had grown significantly and I have two new ones. They are small so the concern isn’t on them right now. The decision was made to change my chemo to gem/cis. I just had my second treatment of that. So far the worse side effect for me has been leg swelling because of all the hydration they give you with cisplatin and me being on my feet too much. So I will take it easy this week and keep the surgical stockings on in the evening and elevate my legs every time I sit down.
I am no longer being treated at MSKCC in Basking Ridge, NJ. After they discovered the CC in March of this year, they moved me to NYC and I’m being treated there now. It’s not easy to change doctors at MSKCC but it just so happened that my oncologist in Basking Ridge was leaving so they gave me an oncologist who works out of NYC.
I would love to keep in touch Caroline. I hope your mom does well. This disease is so difficult to deal with because of all the ups and downs. But I’m trying to stay strong and keep my faith. I stay active when I can. With just two rounds of the gem/cis in me, I am already starting to feel better. I’m a fighter and I refuse to give up. I believe a positive attitude is important.
Take care Caroline. I will keep your mom in my thoughts and prayers.
Love & Peace,
MaryHi Marion,
This sounds very promising for those who have had liver surgery and need the liver to grow. I wish I was eligible for resection. I know it’s a long shot but I’m still hoping they can keep me alive long enough to be eligible. Using the prolactin, after the surgery sounds helpful. I wonder if it’s been used in any patients yet?
Peace & Love,
Mary
