iowagirl
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Kris, Your post tonight made me so happy to read. One year…..and a year it sounds like it’s been. I’ve only been around for a short part of it, but believe me when I say, you have given back far more to others than you’ve taken from the group here. I expect next year at this time to be celebrating Mark’s second anniversary of being cancer free. Celebrate today…and every day……I raise my glass (of water) to you both.
Julie T.
Jennifer, I’m so sorry for you and your family. I lost my father to another rare and very fast cancer back in 1985. We had less than two weeks before he passed. I still miss him so much to this day, but mostly, my memories of him are of the happy and close times we had together. I hope the same for you.
Julie T.
Has anyone on the boards used the blood sample version of the DNA testing? I came upon that during some reading on line and wondered about it, but couldn’t find a lot of information. I think I would do it in a heartbeat if costs were within reason and it is legitimate.
As for the Losartan….if I understand it correctly, the idea is that it could make the chemo more effective. We can only hope. I’m going to be discussing it more with my oncologist.
Julie
I’ve been taking Losartan Potassium for a number of years for blood pressure control. Recently, the amount I was taking (100 mg) was downsized to 25 mg and my BP has been absolutely the same as before. Now, I’m wondering if it would be better to be on the larger dosage again. I feel good on the drug…..can’t say that I have any side effects I’ve noticed and the class of drugs also tends to protect the kidneys. (Note that I am also a diabetic, so the kidney protection was a good side effect and I’m hoping it also protects my kidneys some from the chemo, though I don’t know if that is the case). I also take Atenolol to control irregular heart beats and have had no problems combining drugs for heart therapy. Many times doctors add another heart drug for BP rather than up the dosage of the one or two already used.
Cathy….thank YOU for letting us all know about the two patients in St. Louis. It really helps to know that people are getting the help they need. I would have no problem going to St. Louis based on what I’ve read here on the boards. I live in what otherwise is known as “flyover country,” the midwest….but being where I am, I’m just 3 hours from Mayo, 3 hours from Chicago and just 5-6 hours from St. Louis….all well within driving range. However, before I joined these discussions, I only really knew about Mayo in Rochester. The boards have broadened my choices and I wouldn’t think twice about seeking an opinion or treatment somewhere else now….even if I had to fly there. (and flying scares me a LOT).
Oh what great news to hear this morning. Successful surgery and he’s getting better. It does take a while to get back into “racing form”, but it sounds like he’s doing really well. I had surgery on Feb 28 for one larger tumor (5 cm) and one “sister”/satellite tumor (found during intra abdominal ultrasound) and also am staged at T2b. I am doing adjuvant chemo right now…getting ready for round 3 (of 6 rounds) next week of gemcitibine and cisplatin just in case there were any microscopic cells floating around and that the chemo might kill them. We live on a lot of hope here.
Hugs and hope for you and your hubby.
Iowa Girl
Julie T.I’m so sorry to hear of your husband’s passing. I can hear and feel the grief in your words and know how much you already miss him.
Hugs from Iowa Girl
Julie T.JanBee, I’m sorry that you have a reason to be here on this site…and at 2:15 in the morning. I know how much you are worrying and trying to find answers. I’m a patient, myself, with intrahepatic cc and am in the beginning phase (since Jan 2014) of fighting this monster. There are others here who are so informed in both facts and experience that far exceeds what I know, but you will find that everyone is ready and willing to help you in any way they can from navigating the medical systems to just being here to listen when you think you can’t handle any more. They’re the most compassionate group of people I’ve ever had the fortune to meet.
Iowa Girl
Julie t.Olga, I have no experience to draw upon to share any wisdom with you and Norbert about his treatment choices. I only wish that whatever the choice, you both find peace with the decision and love in each other’s arms for as long as you are given.
Hugs,
Julie T.Thanks Duke….having a “weepy” day here today….was day 8 of round II. Chemo went fine….just was so anxious last night and this morning before hand. The Cisplatin was hard on me, but today was only the Gemzar. They predict I’ll mainly be super tired from this stuff. Lab counts were good except for an elevated enzyme…alk-phos I think….went up to 137…but they didn’t have an answer as to why….something about being non-speific. The main issue….and one that I now worry about every time…was accessing the chemo port…and it didn’t fail to cause problems this time either. The numbing cream seems to help the initial skin sensitivity, but the real problem is pain “inside.” The nurse said that some people have a physiology that makes them more likely to have this kind of pain. OH, how did I get to be this lucky. Oh course, the fact that it was put in by a total boob may have had something to do with that as well. I gladly accepted some Lorazapam in my IV today…..and am going to take one again tonight before bed…..no nausea…just anxiety.. I know that in another week….when this settles down….and the the next port access is farther away (June 11th), I’ll become less anxious again. For me…this is almost like “scanxiety” only it’s portxiety.
Anyway, will take your good advice and find something fun or productive to do later this week as I’m feeling better. Thank you dear friend.Julie T.
Wow,, Lisa…..that was fantastically wonderful. Thank you for sharing that. I needed to hear that this morning.
Julie t.
Lainy…..Okay…I admit…I called it a ringing in my ears…but for most of my life, I’ve had this noise…and it’s really more like locusts when they start to “sing” in the summer. It’s just that right now…they’re VERY loud. I usually don’t notice it much…have sort of tuned it out over the years. This is a LOT louder though. My husband hears the tinnitis as a high pitched ringing…totally different than mine. I wonder if that indicates hearing loss at a different range. In any case….
Can’t say I’m really having such a “bad” time with chemo side effects…just having some…which I expected. Just didn’t think they’d kick in quite this soon…in round two. Maybe I was being unrealistic? I’ll take this over the blood clots from the first time, any day. It’s all a matter of perspective.
Just wondering if these side effects continue on through to day 8…or if after the initial 72-96 hours, they settle down until the next infusion. Anyone?
Julie T.
