Is There A September 2011 Chemo Group?

Hey everyone,

I'm starting on the 8th too - seems like a popular day! I'll be doing TCx4. So far I'm not too nervous, I'll probably get more nervous that day but everyone says it's not too bad so I'm hoping to be lucky and not have too many side effects. I'm also a youngin' - only 29 (diagnosed at 28).

Is it weird that I think it will be kind of interesting to lose my hair? I figure it will be my chance to see what I look like with EVERY hair length, starting from nothing I'm also planning to get a few different wigs and have a little fun experimenting with styles - if I can't have fun with that kind of thing now, when can I? Talk to me in a couple months and I might be sick of being bald though!

Oh and I'm a little unusual because I did tamoxifen before surgery so I've been on it for almost a year already - so for those of you who are starting tamox after chemo I can tell you it's a breeze - at least for me it has been. I literally wouldn't know I was taking anything if I didn't take the pill every night. I had worse side effects from the regular old birth control pill than I do from tamoxifen. But it did help shrink my tumors so I know it works on me even without side effects.

Hope everyone does well with their chemo and we'll all get through this faster than we think!! 

Hi all- Had a long day of treatment today. There from 8 am until about 5 pm. Just wanted to give you guys a short summary of my experience because it really was not bad at all! I know some people have been saying that, but it really is hard to believe when you have some much anxiety and anticipation. I know that I still have the side effects to deal with but the treatment itself went off without a hitch. (Well other than my doctor switching one of my medications without notifying me and then switching my Herceptin timing from weekly to every 3 weeks. I got a cursory explanation from the nurse but still am waiting for the doctor to call me to discuss it in detail. Just adds to my anxiety and makes me question how certain the doctor is of the plan, but I am trying to stay positive and assume it is just miscommunication).

 For those of you that are like me and want to hear exactly how the day might go- I prepared by taking double doses of Decadron yesterday morning and late afternoon. I arrived at the center this morning at 8, had a CBC, BP reading, and temperature taken before being shown to the treatment room. I then met briefly with a social worker, was given some Tylenol, told to take my first dose of Emend and then had my port site cleaned. I know that some are given numbing cream but I was not but was told I could get a script for it in the future. Accessing the port, though the area was still swollen, was relatively painless. To me it was very quick and less that a blood draw with the pain immediately going away once it was in. They did a quick blood draw to make sure it was properly accessed and then gave me some fluids, Benadryl, Alexi for nausea and then slowly began my first chemo agent (Taxotere). Other than feeling a 10 second hot/flushed feeling on my face, I would never have known anything was going into me. It took about 2 hours to administer the Taxotere but I was told it should go faster in the future. Then it was on to 2 hours of carboplatin followed by a short saline flush and about an hour and a half of Herceptin. Then it was about one second to remove the needle, a quick cover of gauze over the port site, and then I was done. Very anticlimatic as others have decribed. I go back tomorrow for the Neulesta shot. I had broughtmy support person, who spent the day mostly on the computer doing work, and I alternated between TV, surfing the web, and reading some of the literature they gave me. They had tons of snacks and drinks at the center and social workers and volunteers milling around open to chat. Were it not for the knowledge of what was taking place, I would say the day was pretty relaxing!

Good luck to everyone! Shelly, I took your advice and got the Bio-Tene everyone is talking about.

Good luck with the port placement tomorrow, Blue Jay. I had no pain the first day but was very sore the next two days and wondering if something was wrong. Best advice I got was to wear a button down shirt if you are getting it by your collar bone because they often put it behind the pect, which makes it very diffiuclt for a few days to raise your arms or squeeze them together to slide off something time.

rjbaby, Bio-Tene should be at any drugstore right by the mouthwash.  It is used a lot in hospitals and nursing homes for dry mouths.  You can also make your own formula using 8 oz of warm water plus 1 tsp each of baking soda and salt, but I figured the $5 was worth the convenience of having the stuff ready to go.  I rinse at least 4 times a day, directions say up to 5 times.

Kimberly, good luck with the quit smoking plan!   I am still smoking...but have to tell you, am getting no satisfaction from it and am starting to formulate a plan to just stop. 

Treatment day was pretty much like any other day.  I felt fine going in, and fine leaving except for the metallic taste, so driving yourself shouldn't be too much of an issue.  But I would suggest if there is anyone to keep you company, take them along!  I have to confess to some really tough emotional moments as the cytoxan was administered which was the first actual chemo drug they gave me.  A few tears but my son helped me through my little meltdown and I was able to shake it off.

As for working, here is my week so far.  Chemo last Friday.  Stayed home on Monday.  Worked 3/4 of a day Tuesday, which was too much.  Came home extremely fatigued.  Back to work Wednesday morning, feeling great.  Then, out of nowhere, I had some big 'intestinal' issues.  I was experiencing some diarrhea starting Monday but chalked it up to all the hydration.  It gradually got worse, and by yesterday afternoon was every hour.  I dealt until around 9pm last night when it started to scare me.  I looked in the "Chemotherapy and You" book, and it said not to take anything (Immodium) without calling the doc and to let doc know if it had lasted more than 24 hrs so I called.  He called right back and told me it was okay to take Immodium.  It is now 8:30 Thursday morning and so far, so good.  But I feel pretty weak so I stayed home from work today.

Doc was a little surprised that I would be having this issue on day 5 and asked if I had been around anyone who was sick.  Also asked if I had mouth sores.  The diarrhea and sores are apparently the 2 most common SEs of Cytoxan.  No sores, I think due to the Bio Tene!

A few things to consider adding to the shopping list:   have immodium in the house.  My husband had to go to store for it.  Also, buy some really soft toilet paper, or even some baby wipes. Hopefully this wont happen to anyone else, but thought I should warn you.  I would also invest in some hand sanitizer and disinfectant wipes as we are huge targets for any infection.  Get the family used to wiping down surfaces and using the hand sanitizer.

The hair:  I still have mine!  Thinking any day now, but so far so good.  I keep staring at the hairs on my arms thinking that they are so fine maybe they would be the first to go.  I do have a wig ready to go and lots of scarves and some hats.My oldest son is in the US Coast Guard and shaves his head all the time, so the plan is for me to call him when it begins to fall out and he will run over with the razor. 

Take those nausea pills and hydrate like a madwoman!

I am glad we are here together. I'm listening also!

CJRT, sorry, no Neulasta.  What is it supposed to help with? 

Hello all!  Had my port placement early this morning -- I'm sore and a little stiff, but nothing terrible and not nearly as bad as it was after my lumpectomy!  I had thought I'd be in "twilight sleep" for the procedure, but no, they used propofol and knocked me right out.

 Shelley2011, if you do ever have a Neulasta shot, non-prescription Claritin is supposed to help with the side effects you might have from that.  My surgeon highly recommended it (the Claritin) this morning in case I need Neulasta during chemo, so I need to get some. 

kimberly, that's too funny! I feel like I have already started to have "chemo brain" ever since I found out I was doing chemo, and I haven't even started yet!

The other day I was in the car two hours after taking a shower and realized I only shaved one leg! If I'm like this now I can only imagine what it will be like once I'm actually doing the chemo (although I guess the shaving thing won't be a problem! ) 

Hi everybody,

I am starting chemo tomorrow at 1pm. T/C x4, every three weeks. After that, maybe rads, and definitely tamoxifen. I started my steroids today, which is probably why I am up at 2am. But I'm glad I found this thread! Thanks for all the info and sharing your stories.



Fieryred, I'm curious why you did Tamoxifen before chemo. I have never heard of that, but think it is an interesting idea given that tamoxifen seems to be just as effective without as many side effects.



I'm 40 and have two children. One will turn 7 next week, and the other 5 in October.



Hugs to everybody!

Cooka- Yes, I thought that I would be getting Cytoxan but when they found out I was node negative, they switched it to Carbo. Supposedly it is now a standard treatment for both early stage and advanced stage. I was told that it is slightly more synergistic with Herceptin so that my HER2+ status was what made the decision from Cytoxan to Carbo and some additional research showing a tiny fraction reduction in lifetime incidence of leukemia (since my doctor was concerned about my younger age). Nothing was mentioned to me about it only being available in clinical trials. I read in my own research that this combo (Taxotere, Carbo, and Herceptin) received approval in May of 2008 and was said to be slightly less damaging to the heart that some of the existing combinations that include Herceptin. Hopefully this is a good choice for my situation. Good luck to you! I'm sure the port will be a breeze compared to what you have already gone through.

 Robo- Think today was your first day. Hope it went smoothly.

Thanks CJRT, that makes sense. I am triple neg so Herceptin is not for me (I was probably reading research on trip neg tx). I have read good stuff about platinum tx (cisplatin, carboplatin), it is great you have access to it.

thanks Kimberly, that's too bad about the jp "grenades." Hope they come out soon.

Good luck Robo:) 

Hi everyone! Went for my pre-chemo appt & to get all the results for my scans & blood tests today. CT scan showed "funny" lymph nodes in my armpit & under my sternum. Had to go for an ultrasound. Radiologist figures they looked normal & it's probably just that I'm only a month out from surgery & things haven't healed yet. Fantastic news, but I was pretty scared for the 3hrs between the oncologist telling me & hearing the opinion of the radiologist. I also have some irregularities with my heart, so now I have to meet a cardiologist before I can start my chemo. Not concerned about it really. My dr just seems to be the paranoid sort, which is a good thing so long as he doesn't give me a stroke before I get this all over with. Lol. So it sounds like I'll be starting chemo on the 12th now, instead of the 6th. Who would've thought I'd be upset to have my chemo start date pushed back?

Really great news is I bought a fabulous wig yesterday. That's going to make losing my hair a lot easier to deal with.

My personal stats are I'm 34, no kids, single, but surrounded by amazing people.

Hi everyone.  I am up in the middle of the night because I slept most of the day away after the port anesthesia.

Shawna - Glad you found a fabulous wig.  Any tips for the rest of us still searching, types, brand names.  I'm glad your oncologist is paranoid and keeping you as safe as possible.

Welcome Ashly.  It's such a tricky question, aggressiveness of treatment versus long term side effects.  The younger you are, the trickier the whole equation becomes for them and you, and harder to make the decision.  I don't think there is a black and white answer.  So many of you here are young, I shake my head in disbelief. 

RJ - I feel dissected too.  Two massive scars healing, 4 drains, and now port.  I don't even feel the difference from the port because my chest skin started getting really sensitive about 2 weeks post-op from, I think, nerve regeneration.  It started out numb for the first 2 weeks in chest area with the only pain being in armpit areas with arm movements, stretching too far.  Now, nerve regeneration.  I guess that's good but it's sensitive like a toothache, headache.

Robo and Suz - Thanks for your descriptions of first treatment.  Robo, I hope the pushing water is key along with anti-nausea pills and all the rest.  My sister told me she never threw up during her treatment, which is very similar to what mine will be except I am minus the Herceptin, which I find encouraging.  She was tired and had bone pain.  She slept a lot, as in coming home from work and straight to bed.  Rip Van Winkle runs in my family.  I think it's a thyroid issue.

Cooka - Sorry to hear about staph infection.  Do you have any idea what caused that?  When did it start?  I saw some of your previous topless entries.  I think you are going to be fun.  I agree with you on this, you have to have some fun with it, wherever you land.

I hope you all have a good weekend.  Kimberly.

Shawna- yikes, waiting for test results is the worst. Glad to hear it turned out to be ok. I haven't had a CAT scan yet, wonder if that is standard before chemo and I am missing something?

Kimberly- My staph infection started about three days after surgery and I probably picked up something during/just after the procedure. Started out as a very sore pink area (with fever) and then basically travelled all over my upper left side until the IV antibiotics got it under control. Had to be in he hospital for ten days with it:(  I read some of your posts about your drains. It's a litle late now because they are almost out (I hope) but a bought a carpenters apron at Home Depot for less than a dollar and it holds four JP's perfecly (and it is washable). So, you just look handy when you are sporting your drains and they are out of the way!

Welcome Ashley! My oncologist wants me to do TC 4 even though he says some schools of thought advocate more aggressive tx for "young" patients ( I am 42 but now that I see all the people younger than me on here, he may have to recategorize me!). I think no one really knows for sure what works best and if your gut is telling you to go with one over the other, follow your gut. When I was trying to decide whether to have a uni or BMX I had one of my lawyer friends put my breasts on trial (arguing for and against mx). Verdict came back Guilty:) Anyway, just sounding out my choices and hearing out loud what was most important for me was very helpful. 

Hey all! Just checking in, haven't started yet. I do go for my wig appt on Tuesday, that should be fun. Ashley, my oncologist said that his group (UCLA) doesn't like to do A as much as they used to because it can sometimes cause heart trouble and long term side effects, and that TC is just as good. But he was talking about in my specific case so I wouldn't want to contradict your oncologist, he knows a lot more details. Just thought I'd mention what mine said (and I'm young too, 29, so that factors in)

 So what is everyone bringing to chemo day? I'm planning to bring a big cup of ice to chew on to avoid mouth sores, and my iPhone and a book. And my wonderful husband

Back at home I've got biotene, anti-nausea pills, and some supplements that are supposed to help with side effects. Hopefully we are all comfortable throughout!