suzannegm
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Hi Kris – Since I too have done things maybe I shouldn’t have (having a glass of wine here and there, doing yard work which made me sore, etc) then I too should probably ask my body to forgive me, BUT I also think doing these things which make us feel more normal are good for our spirit. So don’t beat yourself up. Continue to live your life.
Regarding the reduced dose or waiting for your body to bounce back, out of the 2 FOLFOX treatments I’ve been able to have, one of them has been at a 20% reduction (meaning I got 80% of the oxaliplatin but 100% of everything else). I haven’t been able to have my 3rd treatment because my platelets have been too low. I’m trying to decide, if my platelets are high enough, whether or not I should have treatment number 3 tomorrow at a reduced dose or wait until after my scans next week. If the FOLFOX is not working why should I slam my body with more toxic chemicals? But I also wonder if some chemo is better than none. I’m hours away from getting new bloodwork and I still don’t know what I’m going to do. I want to be in control and it pisses me off that my body is not rebounding as fast as it used to. I’m sorry I can’t help you answer this question but maybe it helps to know someone else is dealing with the same thing.
Hi Marjorie – I’ getting Oxaliplatin + 5FU (FOLFOX). The oxaliplantin has helped wipe out my platelet count. I haven’t been able to get chemo for more than 2 weeks now because of it. I’m trying again on Monday but not hopeful. Not sure what I’ll do if platelets are still too low. There is an injection I can get but the side effects of it are pretty severe. I’m still weighing it out. The docs tell me a platelet infusion won’t help because it will give a false rise and my actual platelets will still take a hit. We’ll see what happens on Monday.
Hi Aberdeen,
I’m currently on the modified Folfox6 regimen. So far my blood counts (especially the red ones) have not rebounded as well as they used to. My counts were fine for my first treatment then for my second treatment the chemo had to be reduced by 20% because my RBC’s were too low. I have had 2 treatments so far, with only mild cold sensitivity and neuropathy in my toes. I won’t have new scans until the end of October so right now I have no idea if it’s working. But even if I do have tumor shrinkage I won’t know if it’s the chemo or the radioembolization I had about 1 month ago. I’m sorry that I can’t speak about how effective it is. I only know about my side effects.I spend about 6 hours at the chemo center getting anti-nausea meds, oxaliplatin, leucovorin, magnesium along with one other vitamin-type med (chemo-brain won’t let me remember!) to lessen the neuropathy, and a 5FU push. Then I go home with a pump of 5FU for 46 hours.
The cold sensitivity is weird, it makes my jaws and lips feel like I’ve tasted something sour, and my throat feels like there’s something stuck in it but my breathing isn’t effected. I think it’s actually a spasm and only lasts as long as I’m drinking the cold drink. When I touch something cold it feels like I’ve held onto an ice cube for too long but the sensation doesn’t linger once I stop touching something cold. The entire cold sensitivity only lasts a couple of days (so far). However, I have read on other sites where people have extreme cold sensitivity, they have to wear gloves if they need something from the fridge or freezer. And if it’s cold outside and breathing hurts to wear a scarf and breathe through it.
I hope I’ve given you some useful info. Take care.
Thanks Jolene, Tess, Marion, Jamie, Lainy, and Kris! I don’t know what I would do without you all. This is such an unreal situation. But all of your words give me so much comfort. I’m not as hysterical today as I was earlier in the week. There’s a plan in place and hopefully it will make a difference.
I’m scheduled for radioembolization on Aug 26. Between now and then my platelets need to come up as they’re in the toilet, I hope to get a new PET scan, and also will have the Shunt study and liver arteriogram. Plus my Mom is having surgery next week so I’ll be helping her out. Trying to stay busy even though I don’t really want to get out of bed most days. I’m trying to be strong for my husband, so he won’t have to bear even more of an emotional burden.
Thanks again for you AMAZING support.
Thanks for all the info! It’s good to know I’m not the only one. Mine does bulge out but 2 docs have told me not to do anything right now, that I have enough on my plate to deal with. No joke right! But so far no real pain, just a twinge every now and then. So far the muscle has just weakened but none of the bowel is coming through (yet). I guess I will wait until it gets worse, but it did start out as a small bulge and now is a large bulge about 6 months since my second surgery. I thought I would only have to deal with the scar, now this. What type of doctor does repair a hernia, a gastroenterologist? I’m clueless. Thanks again!
Hi Kris – I was on Gemzer & Cisplatin for 5 months last year, and again this year for 3 months so far. Last year my hair thinned quite a bit, not that I ever had super thick hair to begin with just a lot of it. Last year I did *seriously* think about shaving my head butwent off chemo for surgery and never did shave it. This year’s chemo has basically been the same, thinning but not yet to the point of shaving my head. I might be starting a new chemo treatment soon (FOLFOX), since the Gem/Cis is not working. Also, the gem/cis combo only put me down hard for 2-3 days, I took Zofran, Ativan, & Compazine, along with some Immodium for for about 4 days after the gem/cis combo treatment. The gemzar alone never made me feel bad, just a bit tired for about 24 hours after. Hope this helps. Hang in there Girl!
Hi Marion – better late reply than never right? I was diagnosed with intrahepatic cc in July of 2008. Failed resection in August 2008, started Gem/Cis in September 2008. Had successful resection in Feb 2009. On my last round of Gem/Cis clean up chemo, feeling Ok so far. I have new scans scheduled for next week. Here’s hoping and praying!
That is the absolute best news you can hear! I’m so happy for Kim and for your entire family. Another miracle!
Hi Alleycattty –
I’m 43 and was on Gem/Cis for about 5 rounds last year. It didn’t cause any shrinkage but my tumors didn’t progress. The tumors remained stable enough that I was able to have resection surgery this past February. I am currently on Gem/Cis for clean up chemo. I mainly am tired from the chemo, have had no major nausea, nothing compazine and zofran can’t handle. I’ve had to get injections to boost my white blood cell count and my rbc count. But my numbers always bounce back in time for the next round. My best to your brother, tell him to hang in there and stay strong!Kris, Kris, – You’re a Gamecock fan? Oh No! Go Tigers (Clemson that is)!
Sorry you were out of whack, but now have fun with your friend!
I was moved and touched by Jeff from the very beginning of my journey, and I continue to be by his words here. He was and always will be an inspiration to me. He helped me find my strength to fight this. For that I will always be grateful. What an amazing person Jeff was.
Hi Irene – we always hope for the best! Good luck with your scans. Remember, knowledge is power. At least you will get a better idea how to proceed with your care. Take control of this thing, don’t let it control you….
I must admit, I’ve never had enough pain having to do with my port that I needed to take pain meds, except of course when it was installed.
I would take Marions suggestion and keep after the docs on this one.
Hi John – I get a little tender there sometimes. I have to make sure the car seatbelt doesn’t lay on top of the line going from the port to the artery, and even over the port itself. Does the area around it look red, as in infection? I have heard it is possible to get an infection but I have no idea what form it takes with a port.
Also, my port gets sore after chemo. I think just the needle going in and out makes it sore, the muscle, skin, etc.
If it continues, I would definitely contact your doctor about it.
