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Dear WordmanWray,
I’m sorry to hear your very sad news. I, too, lean on God for strength and courage with this terrible battle we face with this disease. My prayer is that you will be able to gather with family for both Thanksgiving and Christmas and it is joyful and meaningful for all of you.
Your faith sounds strong and I know it will get you through this most difficult time.
Love & Peace,
MaryHi Pam,
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,
MaryJason, Pattimelt & Judy,
Thank you so much for your words of encouragement. I am hoping the gem/cis combo works for me and shrinks these tumors! Anything is possible right?
I have great trust in God and believe He is right there beside me giving me courage and strength.
Please continue to keep me in your prayers.
Love & Peace,
MarySusie, Willow & Porter,
Thank you so much for the kind words and prayers. I will continue to fight this terrible beast. With my family, friends and my CC family in my corner, I have a lot on my side and feel the strength from everyone to be strong and carry on!!!
I am thinking and praying for all of you always too!!!
Peace & Love,
MaryThanks Marion. I’m hoping this chemo works. I so want to hear the word “shrinkage” after my next CT scan. Please send prayers and/or positive thoughts my way.
Peace & Love,
MaryThanks Lainy, KrisJ and KrisV.
My trip to Florida is January 15 – January 25. The actual time in Key West is January 16 – January 21.
KrisV, I had just gotten the constipation under control but it seems when I started the gem/cis on Friday the constipation kicked in again. Right now I’m taking 300mg a day of Colace and milk of magnesia once a day. I was taking Miralax but didn’t find it helpful. Senna gives me really bad stomach cramps so I’m trying to stay away from it. I think I would like to try “brown cow”. Does it matter what flavor milk of magnesia I use for that?
Please keep me in your prayers.
Peace & Love,
MaryHi Randi,
It was nice to hear you recount your journey and give us all hope! I am going through a difficult time right now and it’s nice to hear positive stories. It lifts my spirit!!!
I’ve been having some issues so they moved my CT scan up from December to last week and it was not good news. All my tumors have grown significantly and there are two new ones – one in my abdomen and one in my liver. The new ones are small. I was on Paclitaxel but they stopped it since it wasn’t working. Unfortunately, it seems the five SBRT treatments I received in May didn’t help at all either. I am now on gemcitabine and cisplatin – started on Friday, 11/8. I’ve had gem before but not in combo with cisplatin so I’m hoping the combo will help shrink the tumors. There’s a lot of other stuff going on but my onc says she is not giving up on me and has another treatment if this doesn’t work. All in all I’m doing ok and don’t look as sick as they say I am. My main issue right now is constipation which I’ve been dealing with for about a month. Seemed to have gotten it under control but then after the gem and cisplatin on Friday it started up again. I’m taking milk of magnesia and Colace and did have some relief today so maybe it’s starting to work.
Sorry for going on but your post really did lift my spirits and I have hope I can get through this difficult time and get to enjoy some more time with family friends. Thanks for your uplifting spirit!
Peace,
MaryHi Barbara,
Just want to thank you for your dedication to CC and bringing attention and funding to it. You are one amazing woman!!!
Peace & Gratitude,
MaryInteresting that my opinion is different than others regarding CTCA. Back in 2011, when I was first diagnosed, I went to CTCA near Philadelphia for one of my opinions. For personal reasons I decided not to be treated there. But they can up with the same diagnosis as my other two opinions. They were kind and caring and worked the schedule to my needs for all the testing and doctor visits.
As for insurance, I have Aetna and they paid for most of the cost at CTCA, as they did for my other two opinions. I guess it depends on the plan you have with Aetna as to what they pay. My out of pocket, at CTCA, was a little over $300 which I paid. CTCA told me if I had issues paying my out of pocket they could assist me financially.
Peace,
MaryHi Snowbird,
I’m being treated at Sloan Kettering and I think I know the pump you’re talking about. It’s not part of my treatment but I’ve heard about it through Sloan. If we’re talking about the same thing, it’s called Hepatic Arterial Infusion (HAI). There’s a medical oncologist at Sloan, Dr. Nancy Kemeny who’s office may be able to direct you to the surgeon who does it at Sloan.
If you go on the Sloan website (MSKCC.org) you can look up Dr. Kemeny’s contact Info.
I hope this helps.
Peace,
MaryWillow,
What a lovely tribute you wrote here to your friend, Martha. I felt like I knew her. I could feel her kindness coming through your post.
Please accept my sincere condolences on the loss of your friend and know that you are in my prayers.
Another soul gone too early because of this terrible disease. It just devastates me.
Love, Peace & Hugs,
MaryDear LadyLinden,
As everyone has said this is a very personal decision. When I was first diagnosed I was petrified of chemo. I imagined sitting there getting chemo and puking the whole time. That was not the case at all. Zofran is a great anti-nausea med and worked very well for me. I am on my third different chemo regimen. I had two different types of radiation in between the chemos. None of the chemo was as bad as I thought it would be. Yes, there were some side effects such as fatigue, loss of appetite, numbness and tingling of feet and hands while on Oxaliplatin (went away once I stopped this treatment) and diarrhea. All were managed well with meds.
I would chose trying the chemo and also asking about high dose radiation such as Stereostatic Body Radiation Therapy (SBRT). As everyone has said, and I agree, you can make the decision to stop the chemo at any time if you get side effects that are too difficult to manage.
This is definitely YOUR DECISION to make and I wish you the best of luck.
Please let us know what you decide.
Peace, Love & Hugs,
Mary
