November 25, 2013 at 1:38 am #71146
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,
MaryNovember 24, 2013 at 5:40 pm #71145ladylindenParticipant
Hi Mary, I also had my second treatment of Cis/Gem on Thursday. I’ll check on your posts to see how you are doing with this treatment plan. PatriciaNovember 24, 2013 at 9:07 am #71144
Thanks 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,
MaryNovember 24, 2013 at 1:59 am #71143scheitrumcParticipant
Like others here, I hope you have some good results from the Gem/Cis regimen.
You’ve received lots of advice regarding constipation. I would only add to stay with the routine that works for you because this drug combo really does impact constipation
On a different topic, not sure if you are experiencing nausea. As we went through more cycles of gem/Cis the nausea and sickening feeling got worse. Our onc. eventually added Emend intravenous as part of the infusion. It made a huge difference. If you are not on Emend already, you may want to ask about it. If we had known its value (we weren’t aware of it at all until the doc mentioned it), we would have asked to start earlier.
And, if not already getting the shot, please ask about Neulasta to improve your immune system’s ability to manage the drop in white and red blood cells. We would get Neulasta the day after the second infusion of gem/Cis.
CarlNovember 24, 2013 at 1:40 am #71142holly22aMember
You have so much good advice here already, I will just say we call it “miracle-gro” in our house (not miralax) an it works for me along with dulcolax. Someone told me the other day that cancer is the enemy and chemo is seal team six. Well, gem/cis is THE front-line number one chemo for CC. I pray that it will turn the tide for you!! Also, have a wonderful time in the sun. That’s good for you too. Lots of love, HollyNovember 23, 2013 at 10:39 pm #71141
Thanks Kris. I may be one of those “sick people” while I’m there!!! LOLNovember 23, 2013 at 10:32 pm #71140kris00jParticipant
Mary, have a great time in Key West! Be careful around those “sick” people!November 23, 2013 at 10:30 pm #71139
Yes 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.
MaryNovember 23, 2013 at 6:22 pm #71138karenParticipant
Holding you in prayer that the new protocol will be just the trick to get you to shrinkage. Glad you are planning a trip to the Keys…such an amazing fun and warm place when the January chills roll around. Sending positive and healing energies.
KarenNovember 23, 2013 at 4:48 pm #71137bananaf1shParticipant
I’m so glad to hear that you’re feeling better after two rounds of gem/cis. It sounds like you and my mom started around the same time. I will definitely keep in touch so we can compare notes. This past week was her first rest week (not counting the two weeks of inadvertent rest because of the stent surgery), and she felt great.
How is the commute to NYC? Do you drive there?
CarolineNovember 23, 2013 at 5:40 am #71136
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,
MaryNovember 23, 2013 at 4:08 am #71135bananaf1shParticipant
I’m very sorry to hear about your latest scans. I read some of your previous posts and felt especially connected to you as my mom is also being treated at Sloan-Kettering in Basking Ridge.
My mom is also on Gem/Cis, and she had problems with constipation when she first started. She tries to avoid taking medications as much as she can, so she didn’t take Colace or Senna, which is what her ONC recommended. Instead, I made her green juice from mostly kale (I put a bunch of kale leaves and some water in our nutribullet and strained the mixture) and 3/4 cup of Simply Fiber cereal every morning. She drank the green juice first thing in the morning and ate the cereal later with 5 diced up prunes. The cereal was not the tastiest, so I cooked it so that it was easier to eat. We did that for about a week and her constipation went away.
I had to return to Atlanta after taking care of my mom for a month, but my dad took over the caregiving duties and still makes her the green juice every morning. My mom is convinced that the kale juice and not the cereal (which she hated and no longer eats) is what’s keeping her constipation at bay, though I can personally attest to the effectiveness of the Simply Fiber & prune combination.
I wish you luck with Gem/Cis, and I’m hoping for some serious shrinkage on your next scan.
Sending you warm thoughts and prayers,
CarolineNovember 18, 2013 at 2:06 am #71134kvollandParticipant
So sorry I didn’t answer your question sooner but I think you may have already found the answer. I really don’t think that the flavor of the Milk of Magnesia matters. Sorry that the Senna is giving cramps. That usually works without doing that.
One thing I can say is that if you stools are still pretty hard, I would increase the Colace a little more.
Lactulose can work too although sometimes it works too well. Some people have a problem with the taste though….it’s pretty sweet. It will still work if you mix it with something like orange juice. Also if you are diabetic it will affect your blood sugars.
Also something else that can work well for some people is sugar-free candy. The sweetener they use in that can loosen you up….ask my youngest son after he ate a whole bag of sugar-free cough drops one day. It was funny and I only felt a little sorry for him since I told him to stay out of them.
Who would have ever thought that our world would be reduced to worry about when we used the bathroom? Drives my husband nuts because I am always asking. Right now we hit it pretty aggressive just before chemo so he’s a little loose before we do chemo. It does seem to be getting a little worse with every dose so now we have added Dulcolax 5 mg 2 tabs twice a day for a couple days and he had glycerin suppositories.
Good luck with it all! It’s really no fun.
KrisVNovember 18, 2013 at 1:35 am #71133
Good to hear from you. I think the milk of magnesia and Colace is starting to help me. I started having BMs as of Thursday but still feel full. I guess it takes time to clean out the system after not going for a week. I’m also scared that there is something else going on. My stomach is a bit swollen and I have a slight rash on the lower part of my stomach and legs. The rash is tiny red marks and they seems to dissipate as the day go on. It’s a little redder after my shower in the morning. It’s not itchy and I don’t have any other symptoms so I have not called the doctor. I’m scheduled to see her on Friday before my chemo and I’m hoping not to have to call her before then. I hate the thought of having to go to the hospital and possibly being admitted.
I think the news of tumor growth and the new tumors have scared me so much that I can’t seem to get my positive footing again. I have moments where I feel positive but then I lose it. I feel like when I was first diagnosed and worried all the time about dying and I hate that feeling. I want a few more years but I know it’s not up to me. I pray to God to give me more time and keep me strong and able to face whatever happens.
Thanks for listening.
Love & Peace,
MaryNovember 17, 2013 at 9:49 pm #71132pamelaParticipant
I am sorry to hear about your latest scans. Hopefully, the Gem/Cis will help. I think that is the chemo combo that helped my daughter, Lauren, the most. As for the constipation issue, other than what others have already suggested, have you tried glycerine suppositories? Lauren had some success with those. I know constipation can make a person feel awful. I hope you get it back under control. Prayers for you.
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