Starting chemo November 2012

Tlym

Thanks, Sneaky!

marianelizabeth

Hey Sneaky, figured I would check on a Nov. site since someone in Vancouver is on the Sept. one and told her I thought there was this one.

Don't worry about the hair thing; I think you will manage it fine. I was at the Look Good Feel Better class today and they said it is rare for permanent hair loss (alopecia) but that it does take a long time post chemo for really good hair to grow back. Class was great so hope you sign up soon! We cut my hair Tuesday night at home - #2 buzz but even that fuzz is coming off now. I went to yoga late afternoon and even took off my cap as I was hot and honestly did not care. I do wish though that I had kept my curly Mohawak longer than an hour as it could have been fun with trick or treaters last night!

You may have already figured out the Neupogen and FairPharmacare but Neulasta is not covered here and is same anyway as Neupogen just more hassle as you have to do the subcuatenous injections on your own instead of a one shot deal each cycle. Victory Program will likely pay almost all if not all of your costs. Also my MO asked me to try the first cycle not using Claritin and I had an easy time. She said it was better to try a cycle so I would have a baseline. So far I am happy with all her advice and hope Karen is same for you. I do do it every other day from second day and have heard that daily times 7 may be rougher but not sure. I only have to do 5 next cycle as neutrophils good.

It is great to have Sept., Oct., and now Nov. threads as much info from those before, those during and those to come!

Thanks all!  Chemo # 2 A/C has been quite OK so far.

Marian

Sneakychiquita

Thanks for all the info, Marian.  Questions are gradually being answered and that helps to reduce the stress for me. I'll definitely be checking out the LGFB class.  I plan on buying a wig before chemo begins and cutting my hair fairly short in a few weeks.  Like you, I think I'll be sporting a bald head for most workouts as I can't stand anything on my head when I'm sweating up a storm.  Chemo start date is Nov 26, but I may need to bump it back a few days so I can retrieve some eggs for freezing.

michellej1980

I have my pre-chemo appointment on Thursday. Am having second thoughts about having the central line put in and am tempted to just give it a go without and see how my veins hold up. This whole chemo stuff is starting to feel real now and I can't believe I have to go through this shit again... :-(

Bren58

Looks like I too will be starting chemo this month, but probably not until after Thanksgiving. I still have to see another onc, then make a desision on which one I want to go with, then get a port and a start date. I have really good veins and asked about doing it with no port, but since I will be doing Taxotere, Carboplatin and Herceptin for 6 rounds 3 weeks apart, then finishing out the year with herceptin, they were not encouraging about doing it with no port.

This is my second time around for BS, but my first time doing chemo. I feel like a newbie all over again!

michellej1980

Welcome Bren58. Can I ask...how can you have IDC now if you had a bilateral mastectomy in 2000 and therefore no longer have any ducts? Excuse me if I am being really dumb!



I'm waiting to hear my nurse's advice on the central line but I am wondering why it wouldn't be worth a try without.

Bren58

Michelle, you are not being dumb. I went back and changed that to "none of the above"! I chose that one when I was first diagnosed and set up my profile because that is what I thought it was. Since then I really haven't been able to get a nice little label to put on what I do have other than my path report says "metastatic Adenocarcinoma in lymph tissue".  I am seeing another onc on the 14th and will try to get some more answers.
Sometimes this process is so frustrating, I can't seem to get a complete story from any one doc. So far no one has given me a stage or a prognosis either.

Tlym

Hi Ladies-TC #1 yesterday. Infusion wasn't bad; cold caps were a bit challenging and kept us very busy. I took two ibuprofen before starting caps and didn't start feeling brain freeze until about 5 hours in, so I decided to just bear it for the last few caps. Felt really well last night. Took dexamethasone (steroid) and ondansetron (for nausea) before bed and slept like a baby! Woke up feeling fine but started getting some stomach cramps and resulting nausea a couple hours later. Took more dexamethasone and nausea subsided but the mild cramping has remained. I really think it's from the healthy flora being striped from my gut, so I have increased my probiotic intake and seeing if that helps. Gave myself a neupogen shot in the belly about an hour ago. Wasn't so bad! Hopefully won't have bone pain from it as I took Claritin (antihistamine) this morning to try to counteract SE. Feeling a bit tired, so I'm off for a nap.

Avrenim156513

I am getting a port. I do not have good veins and if the nurse misses or goes through the vein, I was told that the chemo would burn the surrounding tissue. Better safe than sorry.

michellej1980

Thanks TLYM for the run-down! How long did the chemo take to be administered and how long with the cold caps? Sounds like you're prepared for any SEs! The other day I bought mouthwash, anti-diarrhoea and laxative tablets and I have some loratadine for the potential bone ache. The onc also gave me sleeping tablets for when I start on dexamethasone as in the past it has made me very irritable and stopped me sleeping. It is likely to have been much higher doses and for longer periods last time but I'd rather be prepared!

Tlym

Hi Michelle-Cramps didn't go away with probiotocs, so I mixed 1 tablespoon L-Glutamine in lukewarm water and drank that. It seems to have helped coat my stomach a bit and I was able to eat a popsicle with little pain. Not having a lot of luck with digesting solids tonight.

They started saline first and then premeds for 15 minutes. Nurse had to wait for my cold caps to be on for 50 minutes (per protocol) before chemo infusion started. Taxotere was first and took one hour. I iced fingers and toes during taxotere, which was surprisingly much harder than the caps! Then Cytoxan was administered, which usually takes 60-120 minutes. I opted for 90 minutes for the first time, and since everything went well, I may increase the speed to finish in 60 minutes at my next infusion. Cold caps took 7 hours from start to finish. It was definitely a long day, but I'm happy I'm 1/4 of the way there!

5LuvBugs

Hello everyone. I will be receiving my first "chemo cocktail" in 2 days, on Tuesday November 6,2012. I always said I would "never" get chemotherapy and here I am, waiting to get it started & overwith. I had an Xcela power injectable port inserted last Thursday October 25.. It is very annoying any one else have an uncomfortable port?
Will be on decadron with the chemotherapy -- not fair that I will Gain weight on chemo when others lose it.. :0(. Will also get a neulasta shot the day after treatment. I am scheduled for 4 treatments; 30 radiation & 5 years of hormone therapy --- all for a someone who doesn't even like to take an aspirin! I had the onco DX test and my score was 34...too high to get away with just radiation, the surgeon& medical onco were both surprised with that result because I was only stage 1 with no lymph node involvement. Anyone else in the same boat? One more thing....Good luck to everyone ..let's keep our sense of humor, it will help us through this.. Smile )

5LuvBugs

Michelle you are not alone,,we are all here with you.. Chin up girl!

marianelizabeth

tricia, my port hurt mainly at the jugular incision (entry) point for 10 days and then it went away and I have never looked back. I worried unnecessarily that it would continue to hurt. No problems with access at all and so happy to have it.

Dakota212

Hi girls what is glutamine for?

michellej1980

TLYM - that sounds a long time. My onc reckoned it'd be 4 hours in all, that's with the cold caps. Ah we'll, we'll see. I had a letter in the post yesterday. It seems my pre-chemo appt is tomorrow and so I expect Thursday will be when I start. Eek! It'll be weird if that's the case as I had my very first chemo for lymphoma on Nov 8th...in 1996. Spooky.

Tlym

Dakota-Glutamine to help prevent neuropathy and gastrointestinal issues during chemo.

Michelle-Penguin Cold Caps is a long protocol: freezing for 50 minutes before, during, and 4 hours after infusion. My MO, who has been conducting a cold caps study for almost two years, said 3 hours would be sufficient, so I just left the hospital with the last cap on my head and wore it all the way home, which took about an hour. Are you doing Paxman? Are they worn for a less amount of time?

Last night I was still having a lot of trouble with stomach cramping. Took ondansetron before bed but woke up with pain in the middle of the night. I took a lorazepam at 5:30 this morning and slept through most of the day. Wasn't able to eat or drink much, but finally got myself out of bed and took a few slow walks today. Cramping stopped this evening and was able to eat some dinner and feel much better. Neupogen shot #2 tonight. I might also just take another lorazepam to help me get a good night's sleep. Hoping my side effects are on the upswing.

Sneakychiquita

Hi everyone,

I've been off-line for a few days and am too far behind to truly get back to everyone as well as I'd like.  Just thought I'd take a moment to say hello to those new to this thread and to wish an improved GI for you, TLYM.  And good luck to those starting this week.  I won't be starting until the end of the month, or perhaps not even until the start of December, so I'll be looking to learn from all of you who tread before me.

ckk

Hello, Ladies! I wanted to pop in and give you encouragement as you start on your chemo journey. I started almost a year ago, and one year later, life is back to normal and I feel good. This is hard, but you can get through it and be ok! It was enormously helpful to get support from my fellow travelers on BCO, and the ladies in our group have become life long friends.

For those of you using cold caps: I was a cold cap user and kept my long hair. They do work, and they're worth it. If any of you need info or help, lease PM me. If you live in northern New England, let me know and I can help you!

michellej1980

I'm so pissed off. I went to pre-chemo today and while I was there tried on the Paxman cooling caps. I had been so positive and determined but the damn things don't even fit my head properly. I tried three sizes (assume that's all they have) and none of them fit right. The best fitting one didn't touch the back of my head and was gaping. When applying pressure to it, it gaped at the sides instead. It seems my head is the wrong shape so even if it works, I'll end up with huge bald patches. I'm so upset.



Secondly, the request for my central line insertion has been 'lost' and they want that in before chemo, which was due to start on Thursday. I wanted to forget the line, but the hassle of getting someone to find a vein today to get blood off me was too much. I tell them where the best vein is, and that it's deep but they don't listen.



And lastly, I'm annoyed because the PS nurse is not helping me rearrange my appointment with her to check my healing boob. I'm due to see her Friday but as I'm at the hospital today, Wednesday and Thursday she said I could rearrange and save me a trip. I called her last Friday, she said call back Monday. I left her a message and even bumped into her at the hospital today and she said she'd pick up my message and get back to me but....nada. I might even have to go and get my line tomorrow so that'll be a visit to the hospital every day this week. I don't know whether I'm coming or going and I've had enough already! :-(

powermom

Bren58, I will be on the same regimen you will be on as I am triple+, too.  Got my port at the same time as my bilateral mx.  My start date is November 12, so it looks like we'll be almost in sync.  Sorry you are going through BC again and wish you all the best.

Maybe we can share info as we learn all about chemo.

Tlym

Michelle-I'm sorry you're having a tough day. I had a complete meltdown three days before chemo started-nothing went right, so I know exactly how you feel!

With the Paxman, perhaps once the outer covering is placed on the cap, it will it help mold the cap to your head? Maybe you will still get the benefit of the cold temp even without the snug fit?

I know all this prep and lead up to chemo starting can be overwhelming. Just know that everything you are doing is getting you one step closer to your goal of being free of this cancer! And we are here for you every step of the way.

Tlym

TriciaM-Good luck with starting treatment tomorrow! Are you getting TC? I also take a more holistic approach to my healthcare, so the thought of putting toxins into my body was hard to reconcile. But at the end of the day, I'm a wife and a mother who loves my family and life dearly and will do whatever it takes to ensure I will be around for a long time. Chemo is for a finite amount of time. It may kick our butts, but we will get through it. We're here for you!

mainegirl

Starting chemo in one week-11/13. Scared, but I want to get going so I can put this behind me. AC for 4 infusions followed by T + Herceptin for 12 infusions and then 9 months Herceptin every 3 weeks. I will be taking a cooler of frozen peas when I start Taxol. Hoping my nails don't fall out. Cold caps aren't available where I live, but would love to try that. Got my wig ready. Thought BMX would be the worst part, but living with these TE's is no fun! All for a good, end result though. Good luck to everyone. My Oncologist is also recommending Claritin for the Neulasta shots.

michellej1980

Thanks TLYM! I'm three days pre-chemo too so clearly 'melt-down day' is part of the schedule!



We had the outer covering on but there was still no contact at the back. :-(



I had a call earlier from an oncology coordinator. I can get my line put in tomorrow. Now just to work out how to get there and back home. I'm reluctant to drive in case I can't drive back. Might want sedation and I'm sure i'll be a bit sore anyway. My mum lives in a different city so it's awkward. Reckon I'll have to go on the train and have her collect me and bring me home...



I got a list of all my scheuled treatment dates today. I'm already wishing for 22 February 2013 and I've not started yet!

Dakota212

Three days pre- chemo here also. Maine girl welcome. I am doing A/C also. The big thing for me is when to shave my head. I still have to get a wig. It sounds like from others that we can do this. I fought with the insurance company this morning for the nuelasta, nervous that I won't get it in time. Keep us updated. We can do this together !!

michellej1980

Well done Dakota and fingers crossed you get it in time. We can hold virtual hands on Thursday as we both start chemo.



I think it's all hitting me now. I'm so overwhelmed right now and I can't believe I have to do this shit again. I'm worrying about how I'm going to get to the hospital tomorrow and then about getting the cold caps to fit on Thursday, and if they don't and I lose my hair how long it'll take to grow back and before it does how everyone will know I've had cancer... My friend's SIL is a hairdresser and has agreed to cut my hair for me. My friend just called to suggest a time (that I can't do as I have yet another appt on Weds) and I started crying. I'm so angry with cancer.



I've got a migraine which is now being made worse by crying. I think I just want to go to bed and it's not even 7pm...

Sneakychiquita

Michelle - I've had a few days when I didn't even get out of bed.  Hang in there, girl.  I'm wondering if anything can be wrapped around the outer cap to tighten it.  Like a tensor bandage wrapped around the whole thing.  I'm not familiar with the system you're using so I don't know if what I'm suggesting would work or is just plain stupid.  I just know how important it is for you to keep your hair so I'm hoping we can help you find a solution in time.  I'm assuming you've posted on the cold cap threads to ask for suggestions, right?  

There are so many others I'd like to get back to, but am just short on time.  I do remember someone is starting tomorrow.  Good luck!

michellej1980

Thanks Sneaky. I think this evening is the worst I've felt since my diagnosis nearly four months ago. What you're suggesting isn't stupid. I just wish I had the opportunity to play around with the caps before Thursday.



I think I would be more willing to accept hair loss if it was because the cooling didn't work on me, rather than the inconvenience of the caps simply not fitting adequately. It's so frustrating. I hope I get a nurse who is as desperate as I am for it to work, but I doubt that's likely!



I'm meeting with my boss on Friday to let him know what's happening and warn him that I might not be able to face work for a while just yet. That's if I feel human by Friday morning. Was meant to see him tomorrow till they booked me in for my central line. Aargh!

Dakota212

Michelle



It's hard everything happens and ur like a robot people telling u where to be and when. Just yesterday I talked to college friends who heard and it hit me. I AM STARTING CHEMO. If I hear one more person say ur so strong I might have to scream. Really what is the alternative... Anyway it's good to vent and cry and whatever unwanted especially here since people can relate!!!! Good luck 😃