Pardon the game of 20 questions
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Hi Katie – I feel connected to you since we’re both from NJ and relatively young with this disease. Although I’m 30, I only feel 22
Anyway, I’m on gemcitabine and a clinical trial drug. I had a port installed. It is very useful – my right arm is very thankful. Not to scare you but the port procedure was a little more painful than I had expected… I think the sedation did not kick in until after it was almost over.My side effects have been lots of fatigue for 2-3 days after treatment and only this week have I felt a little bit of nausea. Not enough to get me sick, but just a little uncomfortable.
My hair’s been thinning since I started chemoembolization treatments in January. I never get clumps but a visible amount comes out anytime I wash my hair or sometimes as I sleep. Lucky for me, I keep it short anyway, so it’s not that noticeable. I read somewhere that for women, sometimes it’s easier to get a short haircut before losing it all – to maintain a sense of control over it. Something to think about I guess…
Good luck with everything.
JohnHi Katie –
Keep pushing to get that port! That was one of the first things my oncologist said to have done, after my surgery last year. It’s a breeze to get the chemo drugs with a port in place. The day after I had the port put in (on my right chest just above my right breast), I felt like my shoulder and arm had been hit with a mack truck but the pain only lasted about a week.
One thing you may want to consider is what possible treatment you may have in the future. Even if you have it put in now, and only have a few more scheduled treatments left, you may have more chemo later. A port is easy to maintain, I just go to the cancer center every 4 weeks to have it flushed if it’s not accessed at least every 4 weeks.
I’m starting “clean-up” chemo tomorrow, but it’s been since January that I last had any chemo. It will last for 12 weeks. I’m going to keep my port in as long as I can, for the future, just in case.
Regarding the itching, do they give you any IV benedryl when you get chemo? IV bendryl might help but I’ve heard it’s VERY hard on the veins. Maybe you can ask them about IV or over the counter benedryl. Just a thought.
I was a inch away from cutting all my hair off because it was getting so thin, but I waited and I’m glad I did. Unless you have big bald spots, maybe consider just wearing a cute hat, like Lainy suggested.
Hang in there girl!
Always great to get an update from you Katie, you are in our thoughts too and as always, we’re wishing you the best through the fight… you have great spirits!
Tess
OMG, I cannot believe the doctor made you wait all this time for him to order a port. I am just amazed that your comfort is not being attended to. Yesterday when we went to Teddy’s radiologist they had a dietitian and make up ladies walking around talking to patients! How about getting a couple of cute little beret type hats. They would catch any of the fallen hair. Hope the port issue is settled and you might ask your doctor how to proceed with him when you have questions or something needs attention.
Hey guys! Sorry I fell off the face of the Earth for a while there, it’s been ridiculous around here.
Chemo’s been… okay I suppose. It’s really hard for the nurses to get a vein on me so I’m still working the port issue but I’m afraid I’ll be done by the time my doctor is arsed to talk to me about it! My mother harassed him via inter office notes last Friday so hopefully he gets the hint that hey, I need a port. I’ve been asking for an appointment for weeks! But he finally gave the okay last week so I’ll just have to call my nurse or something. It burns so bad almost every time too, it’s awful. I feel like an idiot every week because I always end up crying.
Among other side effects, I was itchy for a while but that symptom seems to have gone away for the time being. I got some rashes all over my face and neck two weeks ago and I’m super tired of course. I went back to work though so I need to get over that, lol. Only two days a week for a few hours so I’m not working myself to death. I’ve also really had a sweet tooth which I found strange. I’m more of a savory person myself so. I dunno if that counts as a side effect, lol.
Along with the chemo I had to get these shots to make blood grow and that burned real bad too.
They found I have a blood disease, thalassemia it’s called, and that’s why after surgery my blood count was low. Just one thing after another, right?And my hair’s really starting to thin out bad. Am I going to lose all of my hair? I know everybody reacts differently but it’s starting to look that way.. clumps and clumps every day, my car is covered in hair. Icky icky.
I hope everyone has been doing well!! You’ve been in my thoughts a lot lately.
Hi reduced energy level is the main problem with gemcitabine and it can be a cumulative effect so you just have to pace yourself.Hair loss is not usually a problem Janet
Kati…..congratulations on your successful drop in tumor markers. This is a pretty significant drop and I can understand that your Mom is quite happy because, I am happy too.
Hugs coming your way,
MarionThanks so much everybody!! Today went well, they said my tumor marker went from 6000 to 300, so that’s good right? I really don’t know what that means but my mom said she was happy about it. But my blood levels were low so I had to get this shot to make bone marrow make more red blood cells. It really burned when it went it so that stunk.
They told me to go on a diet high in iron so I’ll have to give my mommy a shopping list, haha.The Gemzar went over well so far, it didn’t hurt going in or anything. I guess we’ll have to wait until the next couple visits to see if I have any reactions to it. Though while I was having it, I think I *imagined* a metallic-y taste in my mouth. I’m not sure, how weird of me. I also asked the nurses about ports and they gave me a packet about it, I thought it would be good to ask just in case.
They said only if my veins harden so I hope that doesn’t happen. They showed me how it gets put in and I’m just not keen on getting sliced up again just yet, y’know? lol.Thanks so much again everyone, you’re all in mine and my family’s prayers.
Hello Katie, I hope it went well today. Dad was on Gemzar for 3.5 mo. & he tolerated it very well. No hair loss either. He did not have the port, the docs indicated it could serve as a source of infection… he had a blood infection in Dec. & they weren’t certain of the source. Fatigue & ‘off’ taste buds were the key side effects for him. Please keep us posted!
Tess
Mom said that she would recommend the port to everyone. Has made her life so much easier. She tolerated gemzar very well. Very few side effects.
Good luck!!!
Hi Katie: A friend of mine got Gemzar for a year already (for a different type of cancer). Yes, he did lose all his hair, but it came back (even while still on Gemzar). Here’s the clincher, the hair came back dark and soft whereas before it was coarse and salt and pepper. He was 62. So, that was one thing he appreciated. Yes, his tumor shrunk.
Hey Katie,
I am in agreement with Pam and Marion, my father completely tollerated gemzar. Any possibility of side effects did not occur, including no hair loss.
Infact my dad worked the whole time he was doing the chemo, he even went down to Florida for a week. Sun and fun would do you good!
Peace and PrayerThanks for all the help Pam and Marion! A port is okay to have for CAT scans and stuff right? I always forget they ask that question on the survey thinger they give you. I’ll ask my mommy about it, definitely. And yay, Disney! I’m so happy now, lol.
You’ll all be in my prayers.
Katie….I agree with Pam. A port will avoid the constant poking. My husband never lost his hair nor, did it thin out therefore, I would leave my locks alone. Gemzar has been tolerated well by most on this site with some exceptions. You can always read up on some of the experiences by using the Search Function on the top bar of this page. Disney sounds great to me.
Hugs coming your way
Marion
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