September 2013 Chemo Group

Headed to the AC bar for the last time today! :-) Then I'll be halfway through, and moving on to Taxol. Woohoo!

NOT even looking at some of the bills rolling in yet, it has just begun................been there done that with a daughter who has spina bifida. Already know we will be paying this stuff off for several years. Her last surgery, we paid the hospital and surgeon monthly for a year. Took the hospital less time to turn us over to collection but they both did eventually. Collection office's worked with us and as long as we continued to pay every month they said it would never effect our credit. It didn't either.

Won't be getting my oncotype dx results today. Got a call late yesterday to reschedule as my results aren't back yet. They will be in on the 14th now so go back on the 16th. SO over this waiting game. I'll know about chemo when I know about chemo.......right? RIGHT!

Have a great day ladies.........prayers for all!

Kimberly

Awesome LHL - congrats on last AC! Getting halfway done was a big moment for me. 6 months ago this was not a blip in my radar but now I can't seem to imagine what normal will look like. But getting over the hill on chemo - I am starting to see it a little

Jelly - thanks for defining that. I have never (Thank G-d) needed to really use my insurance so am woefully ignorant of what everything means. Still seems that some things cost little that should cost more and the little things cost so much. I am too very thankful for my health care plan - I guess that is the essence of insurance huh?

A question then...If I reach my out of pocket maximum this year should I try to cram as much radiation in as possible (maybe 4/7 weeks is possible) - I don't think I will reach it next year (at least with the tentative treatment plan I have)?

I hope everyone is having a SE free day - the sun is shining in the Pacific Northwest so that is a good start!

mankatostate - thanks! makes sense. 'another' side to all this treatment huh?

I went in yesterday to get my chest port fixed, and the surgeon was able to get the "kink" out of the catheter line easily. Hopefully this will work and I'll have no more problems with it! Time will tell.

I am on day 7 of my first chemo cycle and I feel pretty good today. I've had many of the food-related side effects that I've been reading about here, like one day loving a food and the next day not being able to eat it. Also, the smell of food cooking is not tolerable at all. The only thing I've consistently been able to eat is homemade vegetable soup, which fortunately is healthy and I can live on.

I feel so badly for those of you who have to try to work during chemo, and also for those who are dealing with the huge costs of medical bills. I'm a kindergarten teacher, so I'm off work for the entire time that I'm doing chemo because there are just too many germs in a K classroom, plus for me it's just too rigorous. I'm using sick leave until it runs out, then our teacher union gives out 40 days of catastrophic sick leave to members in need. If that runs out, then teachers can donate some of their sick leave to me which I hear several teachers have already done for me. As for the medical bills, I have Kaiser so my co-pay is fairly low (the Neupogen/Neulasta is $25 per cycle, the anti-nausea pills are $10 per every two cycles, chemo has no co-pay, doctor visits have $25 co-pay, etc.) It's nice to know exactly how much I'm responsible for and I can plan for it. Now that I look back on it, becoming a teacher was one of the best decisions I have made in my life because even though it's not the best paying job, the benefits now are really paying off. But again, I feel for all of you who don't have such a fortunate situation, and am praying for things to get easier for you.

HI girls - Just checking in - Had my 2nd treatment on tues. with shot yesterday, so far feeling fine, so we will see when the tiredness will kick in, probably tomorrow. Doctor said to take my nausea stuff right away & just keep taking it till moday to fight off the nausea I had last time. So hopefully that will help.

Insurance - Yes, I have all my copays met for the year , but they are starting over in dec. I think. But still paying some copays for the bigger tests I had done, I have to pay like $200 for them. And my prescriptions - my emends is $60.00 each time. They do have some different sites I saw that offer help with copays if you need it. Do a little research , there are some things out there.

Infusion #3 of 4 is done! Mostly slept this time bec. I slept so poorly last night. Hoping that SEs will be as mild as round 2, not crazy bad like #1. But I worry a bit since I kinda took on too much last weekend - went to a 2-day reenactment camping event. Had a ton of support from friends (there was even a BC fundraiser!) but I was exhausted & sore & didn't feel decent until Wednesday. Going to take it easy the next few days.

Talking about bills, ugh, I hit my deductible with surgery, so at least chemo & the super-expensive Neulasta shot is now covered. But I'm not sure if my rads dates will extend into 2014. I checked out California's new health exchanges (aka Obamacare) & was very impressed. I'm a contractor & my husband runs a solo business so we have to pay for private insurance, & the co. said our rates will go up next month. But the health exchanges can save us $100/month with *no* deductible & the same copays we currently have, don't need to change drs. or hospital networks or anything! Going to switch ASAP. And of course, insurance companies can no longer raise our rates due to a preexisting condition like cancer, hah.

Lisa and LHL - congrats on finishing your first rounds! Hope you sail through with the smallest of SEs.

I'm on the eve of #5 of 12 taxols, feeling like I might see the light at the end of the long tunnel - but only 4 weeks into 20 weeks of chemo. And a month into what they are estimating as 7 months of total treatment. Long road, for sure.

If anyone has any favorite hats that are soft and comfy, can you please share the links again? I'm finally ready to admit that I'm going to have to cover my head soon.

As far as health insurance, we have a high deductible/out of pocket max and will for sure meet them this year and next, so if anyone has any links to help on that too, let me know. I don't think I'm getting any Genentech products - I did check out that link and also GlaxoKline and didn't see anything that would help.

Ugh, having a not so optimistic day, I guess. One foot in front of the other, right?

Hey guys! Just checking in. It has been awhile... This has been a rough round. I have just not gotten it together and I go back on Wednesday I am still fighting this cold. In addition to the cold, I took child #1 into the doc on Monday because she had a sore throat. It wasn't strep, but it is something bad. Child #2 was yesterday and last but not least, Child #3 was running fever today. Antibiotics for everyone! I was into the doc yesterday (for three freaking hours of my life!) because I was having a hard time breathing with a tightness in my chest. I was thinking maybe I was getting pneumonia or something. Nope! Guess what it was? Neulasta shot. This is on day 14! Has anyone else ever had this? I had the usual 5-ish days of pain and then it was gone but it flared up again with a passion just in my ribs and sternum, I guess. So weird. And today after going and getting $200 worth of groceries my truck broke down smack dab in the middle of a super busy intersection. Luckily the a good Samaritan came along and pushed my 6000 pound truck out of the intersection BY HIMSELF and the police arrived shortly after and got me to the gas station. I am guessing that is all it was even though my gas gauge didn't read that it was low until AFTER I was broke down -__- Luckily I forgot the ice cream. I blame everything on round two lol. My attitide this time has really sucked. I am actually ready for round three so I can be past this round two curse.

KJ- I did read quite a bit into the Graviola/Sour sop fruit. Before all this I rarely ever even took Tylenol. I have strange/extremely rare side effects to medication pretty often and I was so terrified of chemo! What I read about it is it does seem to be pretty effective in treating cancer but it also has a very high incidence of causing Parkinson's disease =/

Knightzoo- Glad you are okay. Most of my family is in SD and I kept seeing all the pictures. My cousin lives in Piedmont and she had a very difficult time getting out of her house enough to get her dog to the bathroom. I think they got nearly 40". Another friend of mine (also in Piedmont) lost three of their beloved horses. It is so very sad how many pets/livestock have been lost. I really hope that they are going to at least be compensated for it. They had no time to prepare and the poor animals didn't have their winter coats yet

Lighthouselady: After my first round my tumor shrunk more than half the size! I think it is pretty much gone now after round two. I really can't tell though because it was really weird feeling. They were not sure if it was inside of a lymph node or not so I don't' know if I am feeling the remnants of that or not. There is this weird deflated thing there (and I am not talking about my post-breastfeeding breasts lol) My tumor started out kind of more like a sausage shape rather than round and I can still feel something but it is not hard. I also have fibrocystic breasts so there is always weird-feeling stuff there (the whole reason I never did self-checks - it all felt weird) I tried to convince the doc that we could reduce the number of rounds sicne it was working so well but he wasn't having it. :P I thank God for Herceptin!

Hair...my hair is growing on my head. Only my head, and the other is still falling out. It is all super thin and white/grey (I had only just started getting grey after I was diagnosed-so says my hairdresser lol) I wonder what that means for the potential permanent Taxotere hair loss issue. I keep thinking that if it is going to keep trying to grow and keep getting attacked that isn't a good thing. I probably worry too much. It's only hair, right? ugh.

I think hair has been the hardest to deal with for me...as it falls, so does my mood!!! Just got my hats from TLC-thanks to the person who shared that info.

My last good weekend and then TC#2. Sometimes I wish I could just say-let me out of here, I have had enough but I know i can't...yes Knightzoo, one foot in front of the other...

Good weekend all.

Viji

hello ladies, well I put one foot in front of the other and finished round number 4 of AC!! As far as side effects all is good so far. Fingers crossed they aren't as bad as round three. Hope everyone has a great weekend! Happy Canadian Thanksgiving!!! Turkey dinner here I come!!!!

Hockeymom-Hope you had a nice Thanksgiving! Had your taste buds gone bad yet or were you able to enjoy the Turkey?

I am trying to get my husband to buzz my hair but he is so reluctant....I don't think he is ready to see me like that yet. But this shedding is driving me crazy! If he won't do it than I have to get my daughter to do it. So VintageGal, I will join your party tonight!

My DD just bought me a wig and some lycra wraps for my head. They are so comfortable and breathe well and cool for this unusually hot spring weather.

Hurray for all those whose tumours are shrinking!

Millsy1 all the best for Friday. I go on Tuesday...

Viji

Hey girls!! Yes, I had my cut my hair very short, but last night buzzed off the rest as it was just really coming out!! It is a little weird to have it that bald!!!

I just wanted to yell out some encourgagment to you all today!! I was reading in my devotionals this morning about the Israelites, they are just about to be given the promised land that God has promised for them. But the part that stuck out to me over the last chapters was God's words to them - He is always telling them - "Do not be afraid, Do not be Terrified - I am with You & I will help you!!" I just thought how neat this is that His words today for us are just the same. He wants us to not be afraid & Trust totally in Him. I know He is there for EACH one of us & I know He loves ALL of you VERY MUCH!!!! Have a blessed Day!!!

Well Chemo #3 A/C is in the bag. This time I could barely stay awake afterwards, and I'm not even getting pre-infusion Bendryl. Took a *5* hour nap when we got home and then went to bed at 9pm and up at 6am. I'm really beginning to think the Neulasta shot on Saturday afternoons are what make me feel crummy Sunday and Monday. I don't get bone pain per se, but my jaw and sternum ache and I get that very full lymph node feeling in my neck and throat for two days. I also feel like my whole body is getting squished.

I know I could/should post this topic on a radiation forum and WILL but here lately I'm reading, researching and putting together a question list about radiation which I'm supposed to start in January. I did consult with RO right after surgery but you know how your head is spinning and it seems to far away to really deal with or understand. ( I am triple neg, and had lumpectomy with clear margins and CLEAR sentinal nodes. 0/2) Radiation and the idea of it, is just NOT resonating with me right now. First of all I don't quite understand why I have to have radiation if chemo was supposed to kill any "rogue" cells that might have gotten out of my original tumor site. My tumor was left side, above my heart and I worry about lung damage too. Plus my breast surgeon moved quite a bit of tissue around to fill in 2+ cm tumor area with margins that he removed, so how can my original "tumor bed" even be in the same place? I've also heard some nasty side effects and complications that can occur with radiation as well as it's a lot easier to deal with than chemo. Any thoughts out there? Part of me says sure use every thing in the arsenal I can, the other says hmm...maybe radiation is overkill and if I can only use it once why now? I see my breast surgeon on Weds for my final post-op check and will ask him to please convince me of the benefits of radiation. I also want to see and hear some % survival/recurrances of doing or not doing. I may also re consult my RO in the next two months before January rolls around.