I need help….personal experience
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Concerning travelling:
I have been told about Angel Flights which supposedly helps with transport costs of patients with serious illnesses. Also, see if the hospital has any free lodging associated with it. I know that Johns Hopkins has free housing for patients and low cost rooms at hotels.
good luck!
Porter, Thank you for chiming in and good luck when I do the first chemo infusion. I do appreciate any of this personal experience type information. It seems that your experience is the most typical from what I’ve read and goes along with the data sheets I was given. Both of my oncologists contradicted each other, especially about the hit to the immune system. I’m surprised to hear that Oxaliplatin is going harder for you, because both of the oncologists said that it was easier on the body as far as side effects, but wasn’t usually used first because of cost and some insurance companies wouldn’t agree to pay for it unless Cisplatin failed or at least was used first Since I’m now retired, I can take the time to rest if needed…or go for a walk…in other words, to concentrate on “me” instead of all those customers for a change. I know about steroids and jitteriness, as I’ve taken them for severe asthma in the past, though only a couple times and for short durations. It wasn’t something I could take and do my cake decorating business very well….I had a tendency to poke the cake decorating tip right into the side of the cake from shakiness.
It was kind of an icky feeling, but not something that made me feel that bad to not take them.Hi Julie I wanted to pitch in and don’t know if you have started chemo yet. I was on gem cis before my resection in jan. I was on this regimen for about 6 months. As you mentioned you are very aware that all of this effects each individual different, for me I tolerated the regimen well. Yes it did get more difficult the farther treatments went out. That being said I still tolerated it quite well and it didn’t interfere with my daily life often. My biggest side effects were slight fatigue and some nausea. I too travel a couple hours to Portland to go to all my appts and chemo and just now will start getting my blood drawn in my town before I am supposed to have chemo the following day just so I don’t have to take an unnecessary trip if needed. Gem Cis did effect my immune system and I had take a “week off” a couple times due to low counts. I received steroids and anti nausea meds the day of infusion and took steroids in the morning 3 days following. They make me quite jittery so the earlier I take them the better, sometimes its a little plus too because it’ll give me a little more energy. That being said the regimen I am on is now gemzar and oxaliplatin and I am tolerating this much different than the gem cis, and I actually quite surprised unfortunately how worse I feel. Just reminds me that all these medications interact and interfere differently with each individual. Good luck on your first infusion.
PorterWhat 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.
Oh Lisa, I had to laugh out loud at your description of the issue of hair loss /growth and not having to shave legs or arm pits…..just a hoot. Yeah…it was too bad it didn’t happen in the summer….kind of a waste of a good thing there. Thanks also, for all the info on the side effects you did and didn’t have. When two oncologists tell you two totally different things, you don’t know who to believe any more. I trust the people who are here to give me their personal experiences more at this point. I know that each person will be different. My oncologist hasn’t mentioned any medications, like anti-nausea yet. I’ve heard that ginger tea drunk for the 3 days before chemo can help that, but I have no idea where to find it. Our big grocery chain here doesn’t have it. I hesitate to go to our Health /nutrition type store here because it’s in a very bad area of town. Have you ever tried it? I may try to find it on the web if it was worth doing.
Thanks also for the port info…..esp about your arm. That’s exactly what I’m experiencing. It’s improved a little today, but really feels crappy unless I have Advil in my system.
Julie T.
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.
Julie –
You sound like me. I hate the unknown. I want everything laid out and know exactly what is going on. The first chemo is always scary. I do know that everyone responds differently to the chemo. Mark did Gem and Oxaliplatin and did great through it where the 5FU we just finished wiped him out. He would say that he was mostly tired especially towards the end. The immune system part we didn’t have a lot of problems with. His white count stayed up and we had our toddler grandson living with us and bringing all kinds of yuck home from daycare and Mark only got sick once.
One thing you shouldn’t have with the Gem/Cis is the cold sensitivity that comes with the Ox. That was annoying for both of us.
Generally with my patients and with Mark too, they feel pretty good the day of chemo because of the fluids and the premeds. Some will feel a varying range from kind of mild flu-like symptoms to feeling really bad…..it just depends. One thing I will say though is if they give you a schedule to take medications after chemo follow it. Mark took Zofran twice daily and Dexamethsone twice daily after chemo for two days then prochlorperazine as needed every 6 hours and Lorazepam as needed. We really followed the directions and had little problems.
As far as traveling, we have a 4 hour round trip every time we go for chemo or radiation (I put 15,000 miles on my car this last year driving for just the cancer). Mark traveled well. We have a “bucket” of essentials that we carried such as extra meds (nausea, pain), baby wipes to clean up, towels, gatorade, water, etc but never really used much of it.
I think the traveling versus staying home decision is tough. I guess it depends on where you feel most comfortable. We considered a hotel while doing his 25 treatments of daily radiation but opted for the drive so he could be home which is what he wanted.Good luck with your decision. I know you will make the right one for you.
KrisV
Background: I’m almost 8 weeks post curative intent surgery for Intra-hepatic CC with at least half or more of the left lobe of the liver removed. I was stage T2b because a 2nd very small half or less inch tumor was found during intra-abdominal ultrasound. 2.2cm clean margin (tumors were way out in the far end of the node), 6 lymph hilar lymph nodes removed with no involvement, and no neural or venous invasion. It is not known if the large 5.3 cm tumor had seeded, but if so, everything is microscopic as of the 6 weeks post surgery CT scan, so can not be seen.
I have two incisions which are not 100% healed (last quarter of an inch) due to stiches giving way in the last weeks of healing and finally am receiving some wound healing help with that from a wound expert. (The healing had stalled due to dead tissue and some lingering infections).
Since followup chemo, to hopefully kill off any stray seeded cancer cells that “might” be lurking God knows where, should be done 6-8 weeks post surgery for the best possible outcome (not that they know it really works to kill off cells or not), my local oncologist wants to go ahead with chemo immediately.
I’m getting a port installed this Friday here locally. However, upon meeting my oncologist the first time, I’m very uneasy. He came highly recommended and with many saying the same thing, as to how knowledgable he is and what an incredibly compassionate, warm person he is. That wasn’t the guy we saw this week at our first consult. Maybe he was having a very rough day….I want to give him the benefit of the doubt based on the many stories I’ve head…personal experiences. I think I want to go ahead and start chemo with him here locally.
HOWEVER….if this uncomfortable feeling continues, I’m wondering about the feasibility of making the three hour drive to Mayo (where I had surgery and have an oncologist) to do the chemo instead. The distance isn’t a problem….but I’m wondering about complications from chemo….if I should get back home and have trouble. Though, I’m not even sure what that could be…other than I’ve head of allergic reactions. (and I have a number of allergies) Am I totally crazy to even consider going back and forth?
OR…..if we got a place for monthly rental in Rochester, and we stayed there two out of the three weeks of a chemo round….and went back home for the third week of rest, would that work….or am I totally clueless as to what this chemo (Gemcetibine and Cisplatin) will do to me? I asked the local oncologist for an idea of what side effects it had…knowing I may not get all of them , of course, and he said it wouldn’t affect my immune system that much, I would be tired, nauseated, have diarrhea….and lose my hair. The Mayo doctor said it WOULD compromise my immune system, I may have minimal , either nausea or diarrhea and might thin my hair…..and be very tired. I sure don’t know who to believe at this point. I gather than the day of infusion, you don’t feel all that bad, but rather about 3 days later for a few days until the next infusion. Is that correct? What is that third week like? I’ve also heard that the chemo gets rougher as you get further into the rounds. True?
I really don’t function well with the unknown…and not having my ducks in a row. I really wanted to prepare a little in advance…but, with conflicting info or lack of info, I really feel like things are out of control again. I need to be driving this train, but it seems to be speeding along without me in the engine.
I have no idea when I will see the local oncologist in person again…but doubt it before I show up for the first chemo. I am going to talk to my GP tomorrow to explain to her the issues I’m having….but I’m also going to call the Mayo doctor and talk to him again. When I last saw him, he somewhat discouraged us going back to Mayo, driving back and forth, for chemo, just saying that he thought it would be hard on me.
Has anyone travelled like this for chemo before….and what were your experiences? Am I totally off the wall nuts to consider this?
Julie T.
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