mcwgoat
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Hi Lisa,
I’m sorry that the news wasn’t as good as we hoped but at least they’re on top of things and already have options for you. When is the tumor board meeting?
You are definitely in my prayers!!!
I’m going to try and call you tomorrow (Thursday). I hope we can connect. It’s been awhile.
Love,
MaryNat,
That is so frustrating. I feel really bad for you. No way can you sit around and wait three months. That would drive anyone crazy.
As Lainy said, a second opinion might be wise at this time. Just so you’re sure what the outcome is.
Good luck and please let us know what happens.
You’re in my prayers.
Peace,
MaryHi Kris,
Glad things are more “normal” today. Mark sounds like a great guy. He just had a bad day which is understandable given what he’s going through. It’s a tough road and I know for me some days it just hits me what I’m going through and I lose it.
Hope chemo went well today and drive home was uneventful.
Take care.
Peace,
MaryHi Lisa,
Sorry the tumor markers are still high. I’m hoping the PET scan will show positive results next week.
You’re in my thoughts and prayers.
Love, Peace & Hugs to you.
Mary
Nat,
I’m so sorry to hear the beast has returned. How I hate this disease!!! But you’re young and it sounds like you have a strong spirit so that will keep you fighting!!!
You’re in prayers!!!
Peace, Love & Hugs,
MaryHi Carl,
Such great news!!! I’m glad Lynn’s sense of purpose has returned. That means she’s strong and ready to fight again. Good luck starting the Gemcitabine next week. Carry on!!!
Peace, Hugs & Love,
MaryKris,
Don’t second guess yourself about how you handled things from the beginning. You are Mark’s rock and that’s all that matters. Some people feel it’s their right to know everything and you should constantly keep them updated. NEWS ALERT…you’re working to help save your busband’s life. You don’t have time for their pettiness!!!
You are an amazing caregiver. Don’t let anyone make you doubt that.
Although she doesn’t live with me, my daughter is my caregiver. We are extremely close – have always been close. Yet there are times during this hell of a roller coaster ride where we have each let loose on the other, saying some things out of anger because of the frustration of this horrible disease. It’s really hard dealing with this, knowing the chance of longtime survival is slim. Yet trying to live in the moment and enjoy each day that is given to us. It’s just as hard for you caregivers, who have to watch someone you love go through this.
Stay strong Kris!
Peace, Love & Hugs,
MaryTom,
I’m sorry to hear that Ben is back on the down side of the roller coaster of CC. He’s been through a lot but as you said he’s strong and that means a lot when it comes to treatment.
I was diagnosed in August 2011 and have been on a few different chemos along with traditional radiation and then SBRT. Since July, I’ve been on Paclitaxel and it’s keeping my tumors stable. I started SBRT the beginning of May. The plan was five treatments of SBRT and then chemo. I became jaundiced right before starting SBRT but they let me complete it before putting a metal stent in the bile duct in my liver the end of May. My bilirubin was 22 and they said I wouldn’t be able to do chemo if they couldn’t get the bili down to single digits. Thankfully, the stent worked and my bili is actually in the normal range since June. As I said, I started the Paclitaxel in July and am still on it and doing well. The reason for my telling you this is because I felt lousy and not strong enough to handle more chemo. I had a really rough time from May to July with numerous fevers and infections which meant a number of hospital stays. I seriously considered not doing the chemo. I was that weak. But I did it and I’m feeling so good now with just some minor bowel issues due to pain medication. I’m so glad I did it and that my body was able to handle it.
I hope Ben will do well also and come back to the up side of the CC roller coaster. As you said, he’s strong so I feel positive that things will turn around for him.
Take care and stay strong!
Peace, Love & Hugs,
MaryPatti,
I’m sorry about the bad news you received. Is there a reason why you can’t try another chemo or possibly meet with an interventional radiologist to discuss the different forms of high dose, direct-targeted radiation (I had SBRT)?
I don’t know your whole history so I apologize if these are treatments you’ve already had. You are in my thoughts and prayers.
I’ve had different chemos that didn’t work and then had SBRT in May of this year. It seems to have kept me stable. I am now on chemo again, Paclitaxel, and it has kept me stable – no tumor growth or new tumors – as of my last CT scan 9/4/13. I started Paclitaxel in July and will stay on it until it stops working.
Stay strong Patti. As I said, I will keep you in my thoughts and prayers.
Peace & Hugs,
MaryTiffany,
You are an inspiration to all of us!!! Thank you for sharing your story.
God is great!!! He is with us at all times – good and bad – and I thank Him every day for that.
Peace & Love,
MaryDear Betsy,
I am so sorry to hear that Paula died on Monday. It must have been so difficult for you. But I’m sure having you there with her until the end meant everything to Paula. You are a strong woman. I hope, in time, happier memories can fill your mind and bring you some peace.
Please know you are in my prayers.
Peace & Love,
MaryHi Lainy,
Just to be clear…I was the first person at MSKCC to have the spacers put in.
Love your sense of humor…I’m always spacey!!!
Oh Gavin,
A brave man you are taking on a complete house renovation at once!!! My hat off to you!!! Just think how good it will feel when it’s all done and you can sit back and enjoy the fruits of your labor!!!
I’m sorry to hear your mum is not well. Hopefully, you can get the chest infection under control without a hospital stay. I know how depressing those stays can be.
Stay well and keep us posted (and hopefully some pics) on the renovations.
Peace & Love,
MaryDianna,
I had the spacers put in prior to my Stereostatic Body Radiation Therapy (SBRT). The spacers were put in this past March and I started SBRT in May. They were put in for the reasons you stated…to protect the other organs from the SBRT.
I’m being treated at MSKCC and the surgeon who put in my spacers is Dr. Yoon who came to MSKCC from Mass Gen. I was told he invented this procedure and I was the first one it was performed on at MSKCC. He had hoped to do it laparoscopically but was not able to because of adhesions in the area from previous surgery years ago (not related to my CC) and also from the traditional radiation I had in January 2012. I had to stay in the hospital for a week, again that was because of the surgery not being able to be done laparoscopically. My stomach was sore for awhile but I was able to start SBRT in May and complete the five treatments.
Please feel free to ask any questions you may have.
Peace,
Mary
