August 8, 2016 at 5:12 am #92647marionsModerator
So happy things turned around for the better.
MarionAugust 8, 2016 at 12:26 am #92646middlesister1Moderator
SO HAPPY FOR YOU!!!!!!!!August 7, 2016 at 6:17 pm #92645
Dear Googily, I am doing somersaults because your news is so good! It can turn on a dime but enjoy the million bucks you just got! We get happy over the craziest stuff. Hope to hear even more good news in the near future. We are selfish, we want MORE!August 7, 2016 at 4:48 pm #92644
A follow-up to say that DH has done so well through his first two infusions–he actually feels so much better than he did in the month leading up to getting chemo started. We think a lot of that was a combination of tumor pain and not handling the morphine well at all, even with anti-nausea meds. But the meds lineup got completely reworked, and here on Day 12 (with gem/cis infusions on Day 1/, he is running errands, cooking again, and eating plenty. He has some fatigue once the post-infusion steroid course is finished, and there is some trouble with his glucose (trying to get his insulin needs straightened out), but it’s been nice to “have him back” for the past few days. We’re even taking a quick get-away by train for a couple of days during his chemo rest week.
I am (unfortunately) well aware that these things can change on a dime, but his currently improved status is a great gift.July 28, 2016 at 6:51 pm #92643
We certainly now have quite the in-house dispensary! (and I didn’t even list the benadryl or the synthetic pot!)
It has been very tough getting food in him, and liquids, but I am becoming more militant by the second.July 28, 2016 at 6:47 pm #92642
WOW! With all the stuff he is consuming does he have room for food?! LOL Glad to hear he is bearing up well and I hope he has a good weekend.July 28, 2016 at 6:38 pm #92641
My DH finally had his first infusion yesterday–took about five hours, and included two bags of fluids along with IV steroids, Emend, and Zofran. The nurse(s) were great. Also had a visit from the nurse practitioner, and we pretty much completely redid his pain and anti-nausea lineup. He never seemed to get to where he could tolerate the MS Contin (required so many anti-nausea meds to counteract), and the Dilaudid for break-through pain would cause vomiting almost immediately.
He hated the dissolving Zofran, so we got it plain pill form, and now also have Ativan and Compazine, along with steroids to take for the first three days after infusion. And the pain pills are now in the oxycodone family (short- and long-acting). He’s definitely feeling that the tumors grew a bit during the month between diagnosis and when chemo finally got started.
Liver functions still looked very good in last week’s blood work, albeit with some elevation of enzymes, but bilirubin is great.
He’s taking it *very* easy today–I think he feels a bit fragile, but also that he finally isn’t nauseous and so doesn’t want to mess with success. Did get him to have a sandwich and a cookie for lunch. Yay!
Hoping that the next couple of days don’t bring any huge collapses in his status, though we are braced for whatever might come.July 21, 2016 at 3:11 pm #92640
Thanks, wife4life, I agree about wanting to get the chemo started just to feel like something is now actively happening.
And we will definitely pay out of pocket for the mutation testing even if our insurance won’t.
Glad to hear your husband had the fluid drained, and I hope for you both for a good path from your doctor today.July 21, 2016 at 5:00 am #92639wife4lifeParticipant
Glad to hear your husband got his port and will be starting chemo soon. As much as chemo has its side effects, they are pretty manageable. What I found with my husband was that he welcomed the chemo because it meant he was fighting the cancer. We were blessed with a great oncology center near home. The MD Anderson doctors called the shots and conduct the labs and scans etc., but he did chemo in town. The best advice we got about chemo was to track the effects through the time between treatments so you would have an idea of the harder days and good days to help with planning other activities, appointments…etc. my husband was still teaching full time through his chemo so this was helpful for planning lessons and for substitutes etc.
The test for mutations is so important. Our insurance has been awesome but even they did not cover it. We just bit the bullet. So glad we did as this is what opened the clinical trial opportunities.
My husband was able to get his abdomen drained today and they removed 4000mls of fluid. This provided some welcomed relief. They did scans tonight and he will meet with doctor tomorrow to see what’s next. Prayers for all of us as we brave this battle.July 20, 2016 at 12:54 pm #92638
Thanks, Catherine. I had been looking out for the steroid inclusion because of one of your posts about your mom at some point. We’ve already got the Rx to take it three mornings after the infusions.July 20, 2016 at 9:55 am #92637middlesister1Moderator
Wonderful that he’s feeling better and moving forward. For many (including my Mom), the Emend in the IV and the extra steroid (dexamethasone) given on day of chemo and first few days after made a world of difference. She went from mostly bedridden the first cycle to not needing nausea meds at home the second cycle.
CatherineJuly 19, 2016 at 3:20 am #92636
Oh, small world. Teddy and I moved out here 21 years ago to an Active Adult Community called Sun Lakes which is about 5 miles South of Chandler. After he “relocated” 5 years ago I moved to Gilbert. Well, if you ever come out here for a visit (preferably in the winter) you will have to give me a call!July 19, 2016 at 2:55 am #92635
Thank you, Lainy! (Hubby lived for a number of years in Phoenix, btw, and some of his family is still there)July 19, 2016 at 2:23 am #92634
Dear JD, that is some mighty good news and I am sure it is quite a relief to have hubby feeling better. Wishing him the very best with the chemo and hopefully he will be one of the lucky ones with little side effects. Thank you so much for that awesome post.July 19, 2016 at 2:10 am #92633
We had our meeting with the oncologist at the local hospital today (affiliated with Hopkins) and my husband will be getting a port. Unfortunately this now means that the start of chemo is just over a week away, given the scheduling calendar for the port.
Even more importantly, we have finally gotten his nausea under control, though it has taken haldol and marinol (synthetic pot) with benadryl on top (without the benadryl, he was in bad shape). He’s got more energy, has started eating more again, and says he’s gained a little bit of weight in the past few days. It’s a nice emotional boost to feel like we’re making him stronger in advance of the chemo instead of watching him decline while waiting. (And the onc is clearly ready to pull out the heavy artillery to fight nausea once the gem/cis starts.)
And we found out that the Hopkins doctors have already begun the process to get some of his biopsy tissue to Foundation One. (waiting to see what the insurance company has to say about it, though!)
So, in a very bad situation, I feel like things are going as well as they can.
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