lisas
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What good timing – I just popped on to check in. I didn’t buy any ginger tea, although I’m sure I could find it here in Dallas. You might check these queasy pops out.
http://www.choosehope.com/product/queasy-drops-pops
I learned about them in my “chemo class” and the pharmacy @ Baylor carried them. They come in a variety of flavored, including ginger.
Also, just plain ginger snaps or ginger ale can help. I didn’t find I needed it much. I bought a whole assortment of queasy pops and only used a few.
They should go over what all you will get with chemo with you. The nurses at Baylor were great – I hope your infusion nurses will be too. They took time to explain everything I was getting and showed me the labels on everything. You’ll get fluids because the cisplatin is hard on kidneys.
Take reading materials or other stuff. I was gifted a new iPad, which was great to keep me occupied. Even HBO and Direct tv on demand. Or, don’t hesitate to nap.
PS, ironically, I ran into the surgeon who put my port in this morning. My husband was having cataract surgery at the Baylor day surgicenter and Dr. Celinski came out to the waiting room. I was surprised to see him, but they apparently do all kinds of day surgeries there. We had a nice chat.
But, that reminds me of one more thing. I don’t know about yours, but my port was kinda deep, so I learned real quickly to make sure every nurse I had knew what size needle worked! Saved getting poked more than once.
Welcome to the group, although I’m sorry you had to find us. I hope you will find a lot of support here. One of the moderators, Lainy, has a list of signs to watch for. If you send her a private message (go to her profile page to do that), she will email it to you.
Is your brother in Texas too? Where was he diagnosed?
I’m on my second dose of levaquen in a row, because I spiked a fever Friday night. Had just finished a 7-day Rx Thursday. I also have a 30 day Rx of amoxicillin from my infectious disease guy. I spiked a fever again this afternoon while out with our son and his family and had to come home. I may be on the verge of calling in after hours, but I hate to miss the hockey playoff game (it won’t be on a channel at the hospital). But, if temp stays, I will call.
Lainy, I think I adore teddy.
Julie, infection is (for me) a constant issue due to my biliary drain tubes. My oncologist brought in an infectious disease specialist to work with us. I’ve been on antibiotics since being in the hospital with a serious infection in February. Glad your oncologist was responsive. This cancer just plain sucks!!!!
I’m glad you got to spend time with him. I’m so sorry for your loss. I know you’ll be on autopilot for a few days making arrangements. The best advice someone gave me after my little brother passed unexpectedly is that grief is a process, not an event. We are here for you.
Lisa
Well, crap. I’m so sorry he’s having such a tough time. I know my oncologist told me it would be a few weeks from now before I would get my taste back. I feel like I have a thread or something in the back of my throat and I can’t get it and honestly, there are some food textures that I just can’t eat either. I instantly feel like I’ll throw up. My husband claims I’ve reverted to 5th grade, because whenever I’m having trouble eating, I can usually get down about half of a plain hamburger (and I mean nothing on it), peanut butter or a slice of cheese pizza.
I think I know what the J-tube is. When I had surgery for the abdominal blockage back in October, the surgeon also put in my port and, just as a precaution, put in a feeding tube, in case I had trouble eating after the surgery or during chemo. I think that was a J-tube. I used mine once. It was a disaster – a funny disaster – because the surgeon told me I could just squirt stuff in with the big plastic syringe I used to flush it with water every night. What he didn’t tell me was that you have to do it super slowly and basically let it drip in. Well, I squirted a whole can of Ensure at one time. I can’t stand the taste of Ensure, so I figured, well, I’ll get the calories without the taste this way. Putting a whole can into the tube in about 5 minutes made for a very uncomfortable afternoon!
I can — and do — sypathize with the insurance/work issue too. Our health insurance is through my work, as my husband is self employed. And, being self-employed, his income can vary wildly, so my steady salary is what makes the house payment. So many times in the last 6 months, I’ve wanted to apply for our disability retirement program, but my health insurance costs would go up (I’d pay the employer portion) at the same time my income would be cut to 60% of what I earn now (for the first year and then 40% after that). So, I’ve felt stuck continuing to work, which I muddled through as best I could. Fortunately, I have a nice boss, who lost a sister-in-law to breast cancer, so she has been very good to work with, but I, too, feel like that won’t last forever. I had to have so many files reassigned (I work for a federal agency, so all my cases are inhouse). Fortunately, I have a few really nice colleagues who stepped in and helped out. But again, I can’t rely on that forever.
The other thing about them is that I found it very uncomfortable – they inflate a balloon in your abdomen to keep the darn thing in place and every time I bent or twisted, I felt it. Plus, I’d tuck the tube in a pants pocket and forget it was there, so when I would take my pants down, I’d yank it. Ouch. Still, if I couldn’t get nutrition any other way, I’d have it put in again.Anyway, I’ve rambled enough. Sending you a virtual hug!
L
And, PS, if anyone deserves a weekend away after the year you’ve had, it’s you. Maybe you can swing a fun day doing something you haven’t done before if a whole weekend isn’t feasible.
I’m so sorry Mark is still struggling. I think our journeys are so closely linked in terms of schedule. I still don’t have a lot of appetite and things still taste off, but that’s the worst of it. My husband is making me do the evening 1.5-2 mile dog walking loop with him. I can’t avoid it because “it’s too cold outside” anymore.
Hope Mark feels better soon!!!!!
Well, scans set for May 9, which is also my parent’s 61st anniversary. Figure that’s a lucky day. They are set earlier than I expected. That won’t quite be a month post radiation, but the scheduler insisted my oncologist wanted it done before my office visit in 3 weeks.
Quick update: had first post-radiation oncology visit yesterday. My doctor said he forgot I was only a week out from finishing radiation because I looked so good (okay, so maybe I used a smidge of blush and some mascara). But, I really think he was talking about my numbers.
We’re working on scheduling my post-radiation scans. He wants a minimum of a month from finishing radiation to let inflammation go down. True to my signature block, I’m an impatient patient – I think the waiting is torture.
My husband and I got away for a long weekend – both to celebrate finishing chemo/radiation and our 23rd anniversary. Thursday, before we left, I spiked a fever, which is usually a sign my biliary tubes are clogged and going to start leaking. They put me on 2 antibiotics and I held my breath and made it through the weekend (we debated not going and decided worst case scenario, I’d just have to get them replaced at an unfamiliar hospital, but, fortunately, that didn’t happen).
On the flight out of town, my husband asked me a question about flushing my tubes (I flush them with a saline solution 2x/day). Oh.My.God. I totally forgot the bag of saline flush syringes! And we were going to be gone 4 days. Not good.
We landed and got my iPad out and started calling pharmacies. Not something the chains carry. Fortunately, one pharmacist mentioned there was a Walgreen’s pharmacy within a cancer center hospital we were driving by. Called it – yes – they had them, but they are prescription only. Fortunately, they could call my pharmacy at home and get authorization to give me enough to get through the trip. Note to self: never leave home without them again! Although, my oncologist is hopeful that we’ve killed off this bad boy enough that I can get the tubes out. That would be so incredible – I don’t know how to get through a hot Dallas summer without getting in the pool!
Anyway, that’s the scoop from here. Next up is scanning – in a few weeks.
Iowagirl,
All I can tell you is my experience with the gemcitibine/cisplatin regime. I did four rounds of once a week for two weeks and then a week off. Then, my doctor felt I did so well, he wanted me to move to radiation (my tumor isn’t operable … yet), which changed my chemo combo – the gemcitibine reacts too strongly to radiation, so I started getting cisplatin once a week and 5FU (an infusion pump I wore M-F) throughout my 30 days of radiation.
I didn’t lose any hair and, in fact, I was told that few people do with gem/cis. One nurse told me my hair might thin, but if it did, it was not noticable. In fact, a friend made the comment after I finished both the gem/cis cycles and then 30 days of radiation and the different chemo that I still had thicker hair than she did. But, you know, I’d gladly shave my head if it meant I could have resection surgery.
What I did notice was that the hair I had hardly grew while I was doing chemo. What I was told was that hair cells are fast growing cells and chemo targets fast growing cells. This meant I could go longer between haircuts (yay, less $$$) and hardly had to shave my legs or under my arms, which I took as a big bonus. Too bad it wasn’t shorts and bare legged weather.
I had minimal nausea (like one night a week, usually about day 3 after chemo) and if I had been better at taking my anti-nausea drugs before I felt sick, that might have been different.
They gave me a steroid in IV form during chemo, so I always felt GREAT the day of chemo. Felt like I had a lot of energy that day. My worst was feeling draggy, usually about 3 days after chemo and that lasted a day or so. Even with that, I continued to work full time, but I did arrange to work from home two days a week and there were a few days I curled up in bed with my laptop and a couple where I might have dozed off during the day. But not many. If you can, force yourself to get some exercise, even walking helps!
My biggest issue was the change in taste and the fact nothing sounded good to me to eat. Everything tasted off. And, there were certain foods I could not stand to smell as they were cooking – fish and broccoli, primarily. My husband would cook dinner and I’d have to go upstairs and away from the kitchen. I had to force myself to eat some days and I definitely lost weight. I asked my oncologist yesterday about when my taste would come back (I finished radiation and chemo a week ago) and he said a few more weeks.
Hoping you sail through chemo with little or no side affects.
Lisa
PS: It’s interesting how different places do things differently. I just read what Kris wrote. While I was prescribed zofran (anti-nausea), that was the only thing I was prescribed. Everything else was given to me the day of chemo.
I can’t really comment on the driving versus staying in an apartment. There are a lot of people who drive several hours to be treated where I am (Baylor Hospital in Dallas), but I live, literally, about 8 blocks from the hospital. I never imagined when I bought this house 13 years ago that I’d be so grateful to live so near to a major teaching hospital with a major cancer center, that sees a lot of cholangiocarcinoma. You can always give driving a try and if it’s hard, change your plans. I know Baylor has both a hotel and rents apartments that are walking distance to the hospital for patients and their families.
PSS: I found I was really sore after getting my port in. I had a hard time lifting my arm for a few days after it was put in. That surprised me. Although, I really didn’t know what to expect at the time – everything was happening so fast immediately post-diagnosis and I had a blockage that required immediate surgery – they did the port the same time they did my gastroj surgery. But, like you, I like to know what I’m getting into, so don’t be surprised at that.
