September 2013 Chemo Group

Mankatostate: Thinking of you on our third infusion day. Heres to minimal side effects...

Deb - I always thought it was the taxanes (taxotere, taxol, etc) that cause neuropathy.  Maybe because you already had it, the chemo is making it flare up?  {hugs} 

So I have an interesting new side effect.  Well, two really.  I have an itchy, bumpy acne-type rash on my neck and one side of my face.  Lovely.  And I have a burnt tongue.  Will the fun never end???  LOL   At least my nausea is finally gone... it sure hung around long enough this time (5+ days instead of my normal 2).  So now I feel like eating but I can't taste anything.  Weird.

Good luck to those heading to the bar today.  Hoping for minimal side effects for everyone!

I should mention October... or Pinktober.  Does the whole breast cancer awareness thing not bother anyone else?  I've talked with many BC patients and survivors and they are very negative about the whole Pinktober thing.  I'm not.  I'm not bitter about the fact that I have BC.  And yes, a lot of the pink ribbon marketing isn't really done correctly.... but anyone who does anything pink ribbon-related in support of those of us with BC or to raise awareness.... I don't see that as a bad thing.  My son asked if I'd get him pink wrist bands and tape for his cleats for his football games in October.  He did it last year because my best friend was going through this, but I wasn't sure if he'd want to this year with it being me.  He said, "Of course I do."    I love that kid.

Ok, time to decide on my headgear for today.  I have an appt with my MO this morning.  Was going to wear my wig but it's windy and I'd like to avoid the headache, so I might just slap a scarf on and call it good.  I'm sure I'll hear some sort of "I told you so" from my MO because the cold caps didn't work.  Oh well.

The shooting pain is likely from the neulasta shots.  I did find that claritin helped tremendously. I started taking it a day before chemo (two days before the neulasta shot) and will keep taking it every day for the first week after chemo.  Still have some bone pain, but not nearly as bad as round 1's pain.

UP side to being a federal employee today... I'm on furlough instead of sick leave.  Sigh.

Oh yeah Vanessa on the steriods, you should ask them to decrease your dose.  BabeRuth doesn't do any! I asked for none and I got a visit from the NP and a weird look...but she talked with pharmacy and agreed to reduce 2 mg per treatment.  I think I noticed a big change going from 10mg to 8mg - slept better and less emotional days 2 and 3.  So now going to 6mg this Friday.  They probably don't like it when people mess with the system, but if you're having minimal side effects, you may not need it.

I did ask about the steroid dosage reduction, and my MO said they won't reduce it just because of insomnia.  But I'm taking 20 of dexamethasone so it certainly sounds like they can reduce it given what you ladies are taking.  I will ask again.  They did cut my benedryl dosage in half given that I didn't have any allergic reaction, so I don't see why they can't reduce the steroid too.

As for doing Taxol first, my MO and BS said that it allows them to see if the Taxol is working.  If it isn't (after 6 treatments), they spare you the unneccesary side effects caused by Taxol and don't continue.  They said that AC is so effective in shrinking tumors that by the time they start Taxol, they sometimes can't tell if it's working.  That also sounds to me like a good argument in favor of starting AC first though.  My hospital also does a lot of clinical trials (I'm not in one).  And all the trials start with T plus the investigational drug followed by AC.  I also did a little research on the boards here and there was someone who posted a link to some study suggesting that AC is a good "clean up" after Taxol.  Who knows.  I really haven't heard anything reliable that would point one way or the other.

Shalimar-i have been thinking of you today too. I have about an hour left and then I am gtg.

I have my 16 yr old with today. I think it's generally been an OK experience. Probably a little bored but hey what kid doesn't want to miss a day of school.

TC people who ice fingers. Do you do it only for as long as you are getting the "T" part or for the whole time. If longer do you do at home too. Since I was getting some throbbing in nails I thought I would try this time.

I am not too negative on the pink thing.  My facebook status today was, "Happy Breast Cancer Awareness Month.  Many of you know I had surgery and I am now going through chemo, winning the fight with breast cancer, since it was caught early.  Hence, here's my one and only public service announcement... Girls, check your girls.  Guys, check your girl's girls.  Early detection DOES matter.  That's it.  Carry on."

The guys seemed to appreciate it more than the girls, but it was DH who found my lump.  The fire department where I work is also wearing pink shirts as uniform shirts on Fridays as long as I am in treatment, which is really cool.  Anything that increases awareness I am in favor of, though it irks me that many of the corporate pink stuff they sell to "raise money" just generates profits for the companies, and not for the charities or research organizations.

Wishing all at the chemo bar today a good day, and mild, manageable side effects (or none at all) to everyone.

So depressed, heh everyone, I havent been on for a while, thought reading so much was making me depressed so stayed away for a while. I have just had my last chemo last Weds. And am feeling pretty rough. I have no idea why the depression has kicked in so hard when i was so upbeat up until now. I have surgery to look forward to in about four weeks (double mastectomy) and am scared. My son (12) has been having panic attacks and is terrified to go to school thinking something will happen to me. He is an only child and because of how i have been feeling, I haven't been spending much time with him, hes alone so much and my husband won't do anything with him except blame me for the kid being screwed up. I worry about him and cant wait to feel better so I can start doing things with him, that won't happen for a while. I just feel so defeated and alone and know that my husband will be expecting me to return to my former self really soon and i know it won't happen that fast. I must have been in denial before all of this and its just hitting, i don't know. Some say that the end of treatment can be hard to adjust to, finding the new you but i still have surgery to go thru yet. Sorry, needed to vent and cry to the people who I know will understand me the best..

Hope everyone else is handling chemo okay or are getting help if your not.

Love, Rayna

{{hugs}} Rayna!!!  First of all, congrats on having your LAST chemo!  That is HUGE!  And I can see why it takes an adjustment.... this has been your "normal" for so long, just getting through each day, each week, each new side effect.  Now all of the sudden that is over & you're faced with another huge medical ordeal.  I'm doing chemo first, too, so I'll be right there with you on the anxiety before surgery!  Also, I feel for you with your son.  Mine is almost 12 and he's been so lonely and depressed lately.  There's only so much I can do, though.  My hubby is coaching his football team and tries to take him to do things, but he's not nearly as understanding or sympathetic as I am, so he's more of a "tough it out" kind of guy.  It's so hard.

((((HUGS))))Raynaj.  Congrats on your last infusion being done.  I hope you feel better and better each day.  Hopefully you or your oncologist can offer up your husband a dose of reality.  It is hard when you can't do the things you want to do with them.  Maybe on your down days when you don't have much energy, you and your son can make a bucket list of things you'd like to do together this summer when you are feeling better.  That will let him know that things will be back to normal and mom will once again be there to do all of the fun things together.  In the meantime, read together, play board games, video games, whatever you can do.  My son was bored over the weekend and I told him to go draw something on a sketch pad that hecan paint a mural of on the wall of his room.  I have no idea if he will, but he's got lots of sketches.  If he wants to, I will let him with whatever acrylic paints he already has.  It's totally outside the box, but we can always paint over it, and it will keep him occupied for a LONG time if he chooses to do it.  I figure it'll be therapeutic in its own twisted way.

Hugs reynaj, I know the feeling but my boyfriend tries to take the kids out at least once a week. Something I used to do. We are here for you, and this is not your fault.

Rayna, my heart goes out to you and your son. How hard that must be. We are all on this emotional roller coaster and there is no way to predict when it will come and go. You have every right to your feelings. I agree with the other advice about doing what you can with your son at this time, and maybe some information for your husband from your MO? Congrats on finishing chemo..

I just got back from my 3rd infusion. It was longer today, busy place, and I was given extra fluids. The gal started hooking up my Taxotere before the Cytoxan and I had her stop as my husband hadn't returned with my ice chips yet. She said she hadn't heard of doing the ice chips to (hopefully) reduce mouth sores. She asked if I could show her the information. I actually can't remember if it was just on this site or somewhere else. Anyone know?

Ligththouse,

I have a rash on my neck and chest too, hadn't heard anyone else mention it. Just using anti rash powder.

Raynaj,

I don't know you but i can sure feel your pain! We must allow ourselves to be down when we need to -it is a valid feeling. I think children absorp our feelings like a sponge so you need to reassure your son that you are going to be there for the future and you need to believe it too.

Your husband needs a reality check. You can bet he would not be able to deal with this if it happened to him. Get him some help!

Lots of love and hugs from the other side of the world...

Viji

Rayna- Good to see you back here! I echo what soccer mom said. If you can make it thru chemo you can do surgery! And just think Lord willing no more steroids! I had my 3rd chemo today so I am on my steroid high. Little to no sleep for me! At least my husband is out of town so I can watch TV in bed all night while I drink and pee away of this yucky stuff, if I have to. I can relate to your frustration from your husband. My husband has never been one for words and I see all these others with such "loving" supportive men and sometimes it's hard. Don't get me wrong my husband tries but it's just not his nature to be like so many of these other men. He will often say the wrong thing and yes that gets me down. He doesn't do well with sickness. Brings him down I think. His mom doesn't reward sickness and so I think he learned that growing up.

Shalimar- glad to see you made it thru today OK. Funny I was having icing issues today too, only mine were with my fingers.I did also have a little allergic reaction at the end, but seem to be fine now.Only one more to go...but I don't really count this round until I am past my "bad" days.

I brought 4 bags of frozen peas in a cooler, laid a bag of peas on the front of each foot and kind of squished them around to mold to the foot.  Kept a towel or sweatshirt in my lap with the other two bags of peas in a plastic bag in my lap and dug my fingernails into the peas.  Occasionally took out my hand and picked up my cup with the ice chips in it to keep in my mouth.  I looked like a lunatic but my nails looked great afterward!  I used the same peas each time - I just put them back in my freezer until the next tx.  After the last one I had my husband throw them away since he had to lug the cooler around, I thought he deserved the honor, lol!  I recommend dressing in layers also because after an hour or so of icing you will be cold.