Chemotherapy for Stage IV
Comments
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Hope it is a small op and that you get stable enough for them to do it. How many problems is the gallbladder causing or exacerbating, I wonder? Best wishes.
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Hey Kimber, thinking of you and sending good karma your way. What a fighter - you are amazing. Sorry about the complications, I guess people with cancer get sick from other things too. Hoping they get it all sorted out soon. I read every one of your posts, and you inspire me. Keep on truck'n, and go AirForce! SUE
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Kimber - PS: Like Glenna, I too am in the Baltimore area and would love to see you, cheer you, bring you chocolate, help in any way if you come to Hopkins. You have friends here in the Big B, hon. Let us know - SUE
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Thank you all for the prayers and well wishes. Had a long night but the nurses are very sweet. White count is staying up..so they are looking for reason beside chemo since it was so high. Gallbladder area is where most of my pain is but most of my pain is in right ribcage area so hard to tell. I would just like to go home..and yes hopefully if they have to do gallbladder surgery it will be able to be done with laproscope. I just don't want this to mess up anything positive that we were able to have accomplished with the previous chemo treatments.
I do need approval for my second opinion..I have a case manager and they plead our case to the insurance and base hospital. Md Anderson isn't in our network but johns Hopkins is so she thinks they will probably approve their for second opinion. So I'm hopeful
Well wishes to those that are going to have treatment this week. I've been bored so lots of time to pray for everyone.
Ps Laurie the food does suck LOL but not that hungry. Thank goodness for yogurt!0 -
Oh Kimber....You're in my prayers, I hope you are feeling better by this time. And I agree with Maryb, gall bladder surgery is usually laprocopic(sp), but whatever, it is a very scary thing along with everything else you are going through and no concrete answers. Will cyber-bathe you in the white light and prayers...let us know how you're doing as soon as you're able.
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Hi ladies,
I can't thank you all enough for the prayers. Im feeling better tonite. My white count has finally come down. They have me on several antibiotics so just need to not go the other way and become nuetropenic. Dr said today I can keep my gallbladder for now. It was funny the way he told me..made it sound like I won a prize:) they are thinking I picked up some bacteria..all I know is they have tested everything. If I stay stable may get to come home tomorrow. Yeah five days here and I'm ready to go home.
Sue and Glenna thank you for the offers of help in Baltimore I would adore to met you both..so you are on if we go to Johns Hopkins. I would love to met so many of you..this is a horrible disease that brought us together. But I treasure as I read everyones posts ...the insight,love,knowledge,compassion,strength that you lovely women just pour out in your posts. I have felt so blessed by each and everyone of you. Thank you all from the bottom of my heart.
Hugs Kimber0 -
Great news !! Prayers work !! Get home and get rested up and then be warrior woman again!
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Kimber,
Sounds like you are on your way to recovery .... and getting out of the hospital. Hip Hip Hooray. You are probably going to sleep for 2 days after being in the hospital for 5. Glad your white count is stabilizing, And the first prize is ..... one gallbladder! Too funny! Take care of YOU and get the rest you need. Feel our hugs! Glenna0 -
So happy you got some good news. Sleep tight and hopefully you will get to go home soon.
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That sounds good medically and home sounds good emotionally - hope you have a good rest when back at home and fully recover from this bout.
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Great news Kimber - nothing like your own bed to make you feel better!
Have a word with the gallbladder - any misbehaving and it's coming out LOL
Wishing you lots of rest and lots of fussing from your family.
Laurie x
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Hello dear friends..I just wanted to say thank you and let you know I got home about an hour ago:) I feel very fortunate with everyone having the problems they do that I'm home! Just have to take two antibiotics for a week and rest. Talked with my oncologist today again and they may postpone chemo for an extra week but that isn't bad..Laurie I thought of you today and your previous post about forgetting to ask your dr questions. I have had it on my mind to ask her about abraxane instead of taxol and forgot for the second time. Chemo brain has hit!
Hope everyone else is doing okay! Hugs kimber0 -
Kimber
I bet your lovely cosy bed with big, fat, soft duvet and plumptious pillows is calling you! Well maybe not yet as Mr Google tells me it's only 1710 in Illinois whereas it's 2310 here and I am snuggled up in my big bed, sweating like the proverbial pig as I have yet another damn hot flush...
Great that you have escaped from hospital and an extra week off chemo is pretty good in my book. Get some good rest in, so you're ready to come out kicking that Stupid Cancer
(can we have a smiley with boxing gloves?)Lx
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Ok, bad news today. I have failed on my 6th chemo in 13 months (Halaven) after only 3 cycles. This is a bummer; was truly hoping to get some mileage out of it, and it wasn't bad except for the increasing neuropathy which I can live with (stepping carefully...). It had a rapid effect on my skin mets (lymphatic nodes) and I really thought we were onto something good; but the past week the skin mets progressed again, and even on my back and under my arm. GRRRR!
GOOD NEWS, it was doing some good as the bone scan is stable with a tiny progression in my left hip, but not enough yet to radiate. Nothing in femurs, legs, arms, or any organs.
SO, it's on to DOXIL, if we can find it. It is one of chemo's in drastic short supply, but my Onc thinks it has the best chance for me. If we can't get it, it'll be carboplatin and something else he said that I have no idea... these names of these drugs are horrendous.
Anyone been on Doxil?? Carboplatin? What's next?
Still believing that GOD IS IN CHARGE.... he's taking care of me, even if the cancer is trying it's hardest. But, if God stands with you, who can stand against you???
SO GLAD you are home Kim! Rest and get all recovered.
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Aw sorry to hear Karen but good that your onc is thinking ahead and has something lined up. Good too that it was kicking some of the other mets. No personal experience of either of those but hoping they are going to get your skin mets under control.
Laurie x
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Karen, I'm so sorry to hear that your chemo failed and the progression. It sounds like your dr has some good ideas that is very positive:)
I did carboplatin along with taxotere and herceptin..it knocked my counts down pretty low by the fourth treatment from those on I needed at least one day of nuepogene(sp) and did nuelasta right after sixth treatment I think was the one that was the worst needed four days of nuepegene. It also caused GI problems and lost toenails. I also lost all hair too. I'm sorry sweetie and I wish they had a gentler chemo for you to try. You are in my prayers and I will be praying the doctor can get your meds with no problem. Time to kick some cancer butt!
PS thanks for the good wishes ...I am solo excited to be home ..had real food..my kiddos..my puppy..my own chair to sleep tonite;) heck what more does a chemo girl want:) gosh I'm a cheap date! LOL
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Hi Karen, Sory for your bad news, but so glad for your good news - keep on truck'n hon. Re: next chemos, I too did HTC (Herceptin, Taxotere and Carboplatin), and the truth is it was a kick'n chemo combo but a serious one, particularly the carbo - big guns, but entirely doable. You might want to be sure to ask about the neulasta shot - I got one with each chemo and it really helped keep my immune system buzzing along. Very best to you - SUE
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Sue: Yea, I had to do neulasta with the orig. A/C in 2007, makes you hurt like heck for a day or two, but, ... it works and keeps you from having to skip treatment to let your counts go up. I run anemic all the time, but so far during the whole Stage IV thing, I have had great white counts. Thanks for the encouragement!
Nothing beats your own chair, food, kids and a puppy dog !!!
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Ok, can't get the Doxil.... company has to approve each case on a dose by dose basis (STUPID!!)... ie, they may send you one dose but not another. That's like saying you have a massive infection, but we can only give you one antibiotic pill. These companies need to hear from us all, on a weekly basis. SPAM them with hate mail....
Anyway, I'll do the carboplatin and Camtosar (BS201?, irinotecan) one of the recent PARP inhibitors. Research on it looks good. Only out of trials recently. Since I'm so close to a triple-neg, doc feels will do good. His only reservation was that the only other patient he tried that combo on got terribly sick.... but I'm a STORM TROOPER and God has blessed me with very few side effects through all of these 6 other chemos. (Worst ones were the taste bud thing..and the constipation, but, heck, I can live with just about anything). I will not be like his other patient.... and this will work for a long time!!!
Anyone have any info on Camtosar? Maybe I should start a new discussion....
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Oh Karen that is so stupid! I can't believe the companies do that..especially when we need the meds! Big hugs and lots of prayers coming to you sweetie..you are so POSITIVE! You will not be like his other patient..we will pray for little to no SE! Sorry I haven't even heard of camtosar..need to go look it up. Let's hope it kicks the you know what out of the cancer.
Ps it looks like I'm going to MD Anderson..I missed the call an hour a go but some DR called to book appts in Houston they had just got my referral..woohoo...here is praying they can come up with a better plan!0 -
Kimber: I'm going to try the camptosar and carboplatin.... THEN, I'll be headed to MDA too. Good luck and keep me informed of your impressions....! They are one of the best cancer places to go to, and there are many on these boards who go regularly and love it.
HUGS and keep feeling better!
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Karen, YOU WILL NOT BE LIKE THE OTHER PATIENT......you will do GRRRRRREAT!!! Kimber....MDA here your come. Hope & pray that you both get wonderful results with your treatments.
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MDA sounds like a hell of a place! Maybe I'll do the lottery this weekend and if I win it should just about cover the travel insurance. I think it costs more to insure me than Angelina Jolie...
Go Karen and Kimber!
Laurie x
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Karen....that really makes me MAD...feel like blurting (er typin) out a whole string of curses! That being said...I hope the carbo n camptostar work. I had the Taxo, Carbo, n Herceptin with Neulasta every 3 weeks. Neulasta kicked my BONE'S butt, the other kicked all my other butts...LOL. But it worked.
Are you taking a pro-biotic to help with the 'go-go' problems, or shud I say, the 'no-go' problems. If not, I have to HEAVILY recommend (being a problem child in that department ALL my life) to find and use FLORASTER as your pro-biotic. That with 2 teaspoons of BeneFiber every day has done the trick TOTALLY. Taste buds...well...there has been some great advice for that on this thread. The only thing that worked the best for me was plain ol salt and baking soda rinse about 10-15 minutes before eating. Wasn't normal, but definately better. I lost my hair and almost lost my finger nails, still have neuropathy in the balls of my feet and a little on top, but livable. I'll be praying for you!
Love and Prayers to all you lovely ladies!!!!
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Kimber - I am sorry to hear you have been in the hospital but kind of happy you are on the Onco floor. I am thinking they may be a little more thorough in search of the problem. I am sending prayers your way and hope you are feeling better soon.
Memasue & Kimber - I have been on and off of Herceptin for almost 6 years. I am off of it right now but my Onc. mentioned putting me back on it and or Tykerb again after chemo. I have had an echo every three months, the lowest EF I had was 55. I think as long as your heart can handle it and it slows the beast down, they will keep you on it but maybe with a break here and there.
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TexasKaren-like the others I did the carboplatin along with Taxotere and herceptin. only thing I really remember was that I got acid reflux as the carbo ran in. Prilosec helped-they put something in the pre-meds but it didn;t really help. Usually only lasted on tx days. It knocked back a huge amount of cancer for me. I am looking up that drug-it pays to be informed on anything out there. Sounds good that it is recently out of trials. I hope your luck with the SEs holds true.
Kimber-glad you heard from Anderson. One of my friends was there recently and she has so many great things to say about it.
My first week on the Tykerb/Xeloda went well. Day 6 started with some Big D but I am an old pro at controlling that. I always go that way never the C-glad of that-seems way easier to control the D. No other issues so far. I see my onc on Tuesday-guess i will have to get the port flushed as it has been a month. Hoping this next week goes as well. Greasing up as often as I can.
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Need advice
I talked with MDA nurse on Friday..very nice they are willing to try to get me in on the 20th or 27th..I was thrilled! But I then called my case manager and said thank you MDA called me what do you want me to do next. She then explains base commander still hasn't approved anything she just thought it was a good idea to call MDA and get it started in case there is a long wait. Well there is but nurse said case was urgent so no wait. So I have two problems. Commander may not be back till end of next week..ugh military paperwork..and he could say NO. So MDA wants more records but the second I send records they start to order my slides and pathology..which could cost more than 2500.
Second problem is Im due to start chemo on the 21st. Should I even do that chemo here if I go on the 27th? How bad is it for me to be off chemo for 3 weeks. FEC failed lung masses have grown and they suspect pleural may have cells. Besides the other cancer I have in heart area lymph nodes and my arm. I have such mixed feelings I'm scared to do nothing but if they say do..this treatment instead then is that bad to do just one taxol/herceptin?
I'm just really confused right now which way to go..I feel like the cancer is going rampant. I woke this morning to dark stools and blood in the toilet sorry for the TMI..but I just looked at it not even scared and thought what the "f" is next. Please don't get me wrong not giving up in anyway! Just feel like what is next.
If you ladies would give me your opinions on MDA and should I send records tomorrow ..take the chance and just pay if it doesnt go through. Second would you do the chemo or wait! Thank you I really value your opinions.
@Lilly I'm glad your doing okay through the Tykerb. I'm with you d is easier than c by all means. Stay positive and let's pray it kicks the crap out of the cancer!
Hugs kimber0 -
Kimber... don't worry about dark stools unless they continue for awhile or you see obvious blood in them. RE: Chemo. I feel the same way... the way the skin mets went balistic in one week has me scared to pieces about going another week without chemo; but, I am trusting in my God to see me through. I would NOT start the chemo if there is a chance you are going to MDA quickly.
I'm afraid that by the time I get down there, I will have had too many 'cocktails' and I won't be eligible for any study..
But again, I am having faith that if this one doesn't work either, God has a plan for me... and of course, his plan is perfect~! My DH has finally quit obsessing about the future; he finally figured out that he can't do anything about it, it's hard to stress and worry over it, and we're just taking it a day at a time.... living in the NOW.0 -
Kimber, I've re-read your post so many times and wish I could offer some advice. I am not familiar with how the military works. The only thing I know is that I have always heard good things about MD Anderson so I hope the commander approves everything for you and you get to make your appointment there. Just want you to know you are in my prayers everyday!
TexasKaren, you have a perfect relationship with God and your trust in Him and His plan for you. Your positive attitude has inspired me today! I'm praying for you to get to MD Anderson and get into a trial, too.
My chemo week has been a piece of cake compared to what you BCO sisters are going through. Hugs and prayers are being sent everyday!0 -
Kimber,
MDA has an unbelievably efficient financial department. I would carry on as if all will be approved. And is there any way you can ask the patient advocate at MDA about doing the chemo on the 21st? (if it was me, I'd be requesting infusions on the 14th, but I was very aggressive in pushing my treatments to the max)
Best of energies sent your way! ((((hugs))))0
