April/May 2012 Chemo hang out

Claire-Thank you so much for the encouraging post.  I have a lil over a month before I start chemo, and I have been fretting, and scared to death about the effects it is to have on me.  You have given me a positive outlook on the situation.  I agree with Melrose, any other helpful tips, would be greatly appreciated.

 Kristy

Hi all- i will be starting chemo in 2 weeks. The onc said they are going to give me AC/PACLITAXEL i think she said i will be getting one that is nick named the red devil (it is red) i can't say that this puts me at ease at all. I will be getting dose dense every 2 weeks. Anybody else know if they are getting similar.

Clairenaz- everything you wrote has made me feel better already and i am sure its the same for anyone else that reads it too. It is great to read that you only had minimum side effects as i have heard some side effects horror stories it is good to hear it can go fairly smoothly. I will be icing my fingers for sure as i am an artist i am so glad to hear it works! Thanks so much for the info

Dear all,

Claire in Az again. I'm glad to mentor any or all of you, or maybe give a war-hardened vet's perspective instead ...I have done extensive research on so much of this bc business since my dx 9/29/11. I teach at a university so I hope that maybe gives me a bit of credibility--I feel like I've already gotten my PhD in BC though! I'm here to help. 

BTW my BC is ILC, 2 c. lumpectomy with clear margins (close but clear), 6 positive nodes, grade 1 st. II. I'm ER/PR+ and HER2 -.  All chemo's done. On to radiation next and BMX recon (later). I had AC DD x 4 followed by Taxol x12 (12 weeks). I did not use the cold caps b/c of expense. I start tamoxifen in a week.

Dealing with nurses, doctors, chemo-brain, fatigue, SE, fear...I do have experience.

You have to ice DURING infusion. Believe it or not I just used bags of frozen peas to ice; someone else on this discussion board suggested it to me. My husband brought them in a small cooler--a six pack cooler--with one of those frozen ice packs. We put them in the nurses fridge. When I knew the Taxol was coming, he went and got them. We had transferred them into 4 ziplock bags before we left for chemo.

I opened two and stuck my hands up to my nails in each one--one on each side, in my chemo chair. The other two I squeezed the air out of and put them on the ends of my feet. I wrapped a blanket around my legs to help hold them.

The first taxol took about 2 hours--they drip it slowly to avoid any possible reactions. By taxol #3 I was down to an hour. I kept icing for as long as I could stand it--then took a short break--about one song on my i-pod! But I kept at it, and my nails now look the same as they always did. No damage at all.

I also periodically took one of the bags off my feet and held it to my eyes--thinking that it was like a "cold cap" kind of tx. My eyebrows and lashes thinned, but I didn't lose them completely.I don't know of anyone else who iced their eyes--so I might have been the first.

Icing isn't very comfortable, but I thought if I could stand it for such a short time it was worth it to keep my nails, eyebrows and lashes. Losing my hair was bad enough.

You can re-use the peas if you keep them in the zippies and re-freeze them when you get home. Just remember not to thaw them and serve them to your family

Claire

Hello ladies

It's Alice the Cat here. I'm just one month ahead of you re treatment. Started FEC chemo on 12 March in the UK.

Over here, the hospital I'm at does not insist on patients having a port. They just see how it goes with a cannula first.

We have to sign a consent form for any procedure or surgery so I won't be signing one to get a port any time soon.

It is a risk, of course, because the chemicals could leak out and damage the tissues in the arm but I am willing to take that risk for better quality of life.

In between transfusions, I am doing my best to get on with life (neutropenia excepted) and forget all about breast cancer.

Everyone to their own of course. 

Good luck!

Alice the Cat

Pkate,

I had only heard of nail problems for the taxane-based drugs...taxol/taxotere.  AC CAN cause some nail discoloration, like streaks, in some (I didn't experience that), but isn't reported to cause the lifting/blackening/soreness that the taxanes do.  

I had a port installed since I was getting about 5 months of chemo altogether. I think that to port or not to port depends on how many infusions are scheduled.  I wanted to avoid any infusion problems--sometimes a regular IV can leak and bleed the drug into surrounding tissues, potentially causing some damage, which sounded awful. It sounds weird, but I loved my port. I'll get it out in about 10 days, after my white count has a chance to recover a bit from my final tx.

Claire

I'm 25 years old. I just had a bilateral mastectomy 2 weeks ago. I'm getting my port in thursday and will probably have my first round of chemo on 4/9. I was told my hair would probably fall out a week after the first round. I'm trying to decide if I should shave my head prior to chemo or just wait until it starts to fall out before I do anything drastic. Please help!!!

Thank you MsPhil. It's good to hear stories of survivors. I've been doing pretty good until today. I'm in a bit of a "funk". It's all becoming so real now. I have an appointment everyday this week except Friday preparing me for the chemo. I took losing my breasts pretty well (42dd's were a bit of a hassle lol) but im not sure how i will take losing my hair. I cry just about everytime i think about it. I am thankful because I know things could be worse; I'm just trying to figure how to cope with it and the best way to go about it.

Thank you Sandik. I think I may do the same thing it sounds like the easiest thing to do.

Laura, what are cold caps??

I am joining you all from the Feb. MX group. I had BMX Feb. 6. I am getting a port placed today. I can't eat or drink anything this morning, so I am spending time at the computer trying to keep my mind off of it! I am finished with all my scans. I did not have to drink anything for any of my tests. All of them involved a shot with a radioactive tracer of some kind. I should be glowing in the dark by now!!  My chemo is to start April 4. Four treatments of AC, three weeks apart; and 4 treatments of Taxol, also 3 weeks apart. So this journey will last about 6 months. Then RADS if I go for that. I had 2 nodes involved of 25 taken. I have TE's so I am not sure how that is going to play out if I get RADS.  I picked out a wig last week. It is about the same length of my hair but with a lot of highlights. I think I will wait until I am ready for the wig, see how much is coming out by then, then just start wearing it and tell people I got highlights! I am a former hairdresser, so losing my hair will probably really bother me, too. But I am extremely curious what it will look like when it comes back in. I am feeling a little overwhelmed with all of the pre-chemo advise. I don't want to go into it uninformed and not prepared, but part of me is in denial and just doesn't want to read any more or think about any of it until I absolutely have to! Does that make sense to any of you? Reading about it usually happens in the evening when I have time, and then it keeps me up at night!

Hi all,

I cut my hair short before the first chemo tx. to "ease" into a new do.  It began to fall out 3 weeks after the first tx--not handfulls just a slow steady drop. I could have kept it longer but it gets pretty messy--you'll see. The day before Thanksgiving I had my hubby shave it. It was a shock. You just have to do it, not think about it too much. 

I mostly wore a ball cap with hair attached (looked real) and a half-hairpiece with berets, which looked pretty cute.  

The cold caps are great if you can afford them.  Insurance won't cover, and the investment just for rental over a long period is pretty steep.  I decided to use my money elsewhere--supplements, vitamins, all those that weren't covered by insurance.

I didn't wear a full wig until I bought one over the internet just before my hair started growing back (go figure!).  The wig I chose before I cut and then shaved my head just looked really, really weird to me.  I felt like that was another person, who used to wear her hair that way...and I felt like a fake in it.  But that was just me.

Thinking positive is great, but if you can't, don't worry about it. Sometimes feeling like we don't always "think positive" sets us up to feel guilty because we simply can't think that way.  We are all pretty new in this journey, with maybe days, or weeks, or (in my case) just a few months into this.  I've had some pretty dark days (even weeks) through all this, and I don't think it made a difference in my outcome at all.  Feeling scared, blue, depressed, angry is very, very normal.  

Arizona Claire