Anyone starting chemo in June 08

KKing, I started chemo in April '08, so I hang out on that thread.  I won't be finished until June, though, so I will probably stop by occasionally, at the one you've created here.  Many of us stick with a particular thread that's specific to our starting date (like the thread you started here), or we hang out on a thread that deals with our type of chemo.  For instance, I am getting Taxotere & Cytoxan, so in addition to the April '08 thread, I am bonded to the Taxotere/Cytoxan group.  It's like a sisterhood.

The really great thing about all this is that, not only will you meet other women (and a few husbands) who are experiencing the same things you are at the same time, but you also get the benefit of advice and experience from women who've "survived" those things and moved beyond them.  It has helped me immensely to learn about OTC drugs that might decrease some of my side effects (SE's) (taken with my onco's permission, of course), and to find out I'm not the only one who developed itchy skin bumps on my head, and to learn that most women actually shave their heads before their hair is gone.  (I didn't shave mine; I just let it come out.)

This is not a great adventure.  It sucks, no doubt about it.  But, we find ourselves here because chemo is one of the things our onco's can offer that will (hopefully) increase our likelihood of defeating this beast permanently.

Welcome to the sisterhood!

otter 

I will be finding out on the 23 of May when I start my chemo but should be very soon and I need lots of support also from everyone. I would love to talk to you during chemo as I think it will help alot. I already had a mastectomy of the right breast. I am now debating if I should buy a wig or go with a scarf or something, how do you feel about that.

Bonnie

we live in Northern Calif. and it gets to be over 100 in the summer, so I think a wig would be painful!!LOl, I told my 4 kids to get usd to the bald, hat and scarf do-rag mom for the next 5 months.....the 5 year old just wants to be able to color and tatoo the baldness...the 12 yo dd is horrified that I woudl go out in public without hair....the 10 year old is oblivious and the 16 yr old ds just laughs....

As far as my husband, he offered to shave his own head, but I told him that one baldy over here would be enough....My best friend said she has always wanted to go bald since that one Star Trek movie, so she is seriously considering shaving when I do and then getting us fun wigs to wear!

Well, more later! ran

I assume I will be a June girl......I have my post-op with surgeon on May 27th.....just got done with lumpectomy......and full node dissection....was supposed to be SNB.....but node was positive....so they moved on to full dissection.....I will be given my referal to oncologist closer to home at this post-op......and judging by other's time frames......it looks like I will probably be beginning sometime in June.....glad to have some company.....although wish none of us had to be here.

I haven't been to see about a wig yet.....but plan to......and have also been poking around on the internet for different hair piece/scarf/hat options...I have 2 young kids.....I have a daughter that will be devastated by the hair loss.......I will have to try and make it as easy on her as possible......have to admit.....it is the part of this whole proccess that bothers me the most.....

Jax

Courtesy of rockthebald - from the May 2008 thread:

Edited 19 May 2008 02:23 PM by rockthebald

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FYI, I HAVE BEEN UPDATING THE LISTS ON "TIPS FOR GETTING THROUGH CHEMOTHERAPY" (another thread) BUT NOT THESE.   

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I'd been collecting pointers which my friend Miki graciously compiled/organized for me.  Since nearly all of this repeats others' posted information in a different format, I'm happy to delete it if its redundancy and plagiarism bothers anybody! I mean no harm.

As with all things chemo, everyone is different.  What works for one person (or one therapy), may not work for everyone.

Chemo Tips - Compiled
(or Everything you wanted to know, and a whole lot more)

Pre-Chemo/Things to ask about

• What sort of antiemtics (anti-nausea meds) are you getting? According to American Society of Clinical Oncology guidelines, everyone should be getting Emend, a steroid (dexamethasone aka decadron is the most common), and a medication like Kytril or Zofran (the Aloxi you may get in your IV at chemo is in the same family of drugs). Drugs like phenergan and compazine are NOT considered sufficient but might be used in addition to the others.

• Make sure you are given the drug EMEND for the nausea.

• Eating a popsicle, or something else very cold, while being given adriamycin may prevent mouth sores.

Possible side-effects

General care

• Drink as much fluid as you can
• For moisturizers, you probably want something as scent free as possible.

• If you get a manicure or pedicure, bring your own manicure set

• To help keep your RBCs up, one person recommended a lot of peanut butter. (Miki note: I'd translate that to really saying "eat lots of protein.")

• Get soft, seam-free (or as seam-free as possible) hat for sleeping-in

Hair loss

You may want to get a silk or satin (very soft/smooth) pillowcase for when your hair begins to fall out; scalp may be sensitive. 

I got my long hair cut short pre-chemo. No clue how to style short hair. My "stylist" said my I should style my new short hair with the tips of the fingers applied to the tips of the hair (rather than my hands).

When hair starts to fall, a lint roller helps to remove lingering hairs.

Metallic taste

• Use plastic flatware instead of metal
• Biotene mouth wash (and/or toothpaste and chewing gum, lemon/lime cordial)

• Oasis products were also mentioned

Port care

• • The nurse may clean the port by injecting Heperin into it. A horrible taste can sometimes be avoided by holding your nose while the Heperin is injected. 
• • A numbing agent may make entry in and out of the port less painful.

Mouth sores

• "If you get mouth sores, there's a little cocktail you can whip up with liquid benadryl and Maalox."

• I put lemon or lime drops or slices into my water glass -

Hairy tongue 

• Frequent cleansing with combo of water, baking soda and salt is recommended,
• Sucking on lemon wedges to re-encourage salivary glands,
• Brushing one's tongue with a toothbrush, hydrating with water. Cytoxan seems to mess with the salivary glands. 

Pain/aches
• Specifically if you are going to be getting Neulasta, Aleve was recommended as a pain killer for aches. The poster suggested taking one 30 minutes prior to the Neulasta injection, and then regularly for 2-3 days after.

Ibuprofen

• (Miki note) - in general, I think the feeling is that Tylenol is the first pain killer of choice as it has the fewest possible side-effects

Sleeplessness
• Ambien CR was recommended because the CR - Controlled release - allowed for her to get to sleep and stay asleep

Acid reflux/indigestion
• An H2 blocker such as Pepcid or Nexium

Constipation

• Colace (docusate sodium) is an over the counter stool softener to have on hand.
• Senekot-S is a gentle laxative with a little Colace added in.
• Eating active culture yogurts (e.g., Activia) is recommended by some
• Snacking on things like prunes or dried apricots can help
• Lots of water helps here, too.

• I take one square of chocolate ExLax the night of chemo, and another one the following evening. Then I drink gallons of water and tea. I also eat Activia yogurt every single day. So far, so good. I think the secret is taking something at the same time as the chemo before things can get really bottled up, so to speak.

Diarrhea

• Imodium is good for stopping this
• Key worry is dehydration, so keep drinking as much water as you can stand
• Stay away from sugary things, as refined sugar can aggravate diarrhea
• From a dietary perspective, you can try the BRAT diet: Banana, Rice, Applesauce, Toast, which is often very helpful.
• One recipe offered:

o 1 Green Plantain (not banana) Usually Spanish stores or grocery have
o 1 garlic clove
o Olive oil
o Boil the plantain and add a pinch of salt; mash it and add garlic and olive oil (note from Miki, I'd be very cautious about how much olive oil).

"Nether Region" Care

• Another tip - keep a squirt bottle by the toilet and rinse your self off with warm water after urinating for the first week or so. The chemo often burns on the way out, causing discomfort. I used an old water bottle and when I got this tip earlier on-line the person suggested a ketchup bottle. If the water rinse doesn't help - which it did help - but still got sore - take Uristat or AZO - both over the counter. These are analgesics which help with the burning and pain. But remember to have yourself checked out if you have bladder symptoms, because lowered bloodcounts can lead to bladder infections.

• (Miki note) If you wind up with diarrhea, I strongly recommend the flushable moist wipes; they really help with general soft tissue irritation.

Thanks for taking the time to copy the info here for use June gals......I seem to spend hours on here.....but have not come accross that info before....so thanks.....it seems.....I start reading a thread.....not related at all to my situation and then get caught up in them and like to read them until the end.....and some of them are really long.......anybody else find themselves doing that?......it's truely amazing the support and friendships that have gotten started here....

Jax

I want to say "hi" to you all who are starting chemo this June.  I'm a graduate of the June '05 chemo group, and you are welcome to check our thread (started by Dana Hollis, sometimes it's back on page 3 or so) and see how we all did - we had an amazing mentor who helped us (she had chemo a few years before we did) and her advice will be great for you as well.  It looks like you are getting great advice here already, that list is wonderful!!

I hope you all have as easy a journey as possible, and that you find the support you need here.   

My favorite saying from this experience is "The woman who finishes the race is not the same woman who started the race." It's so true. 

Best wishes, Nancy 

Dx 5/11/2005, IDC, 2cm, Stage IIb, Grade 3, 2/21 nodes, ER-/PR-, HER2-

Tomorrow I have second appointment with  onco... It seems I will be starting in late May or in June..

I was very positive until now, but after first visit with my Onco I am really worried.  Well, I am gathering my strength now...

Hello Ladies

i was dx with IDC, 2cm, Stage 2b, grade 2, 2/11,  on March 26, 2008.  I have a, left breast nastecotmy an 4/18.  Path showed another tumor on the margin at the 4'oclock position.  had second surgery last Friday.  Will see surgeon on May 28 and the onco again on May 29 .  My first meeting with onco she said I will be receiving A/C every 2 weeks for 4 months and 12 weeks of taxol weekly. 

Still waiting for the PET scan and MUGA scan reports.  My bc surgeon placed my port in on 4/18.  If have the worst veins.

Like most of you I don't know if I will buy a wig or  not.  It gets pretty warm in sw Florida.

I'll be part of the June group too.  Starting 6 rounds of FEC/T (3 of each, that is) on June 5, here in Ottawa, Ontario, and participating in a fitness study that will require me to exercise at the hospital 3 times a week (!).  I suspect it will kinda suck some days, but I'm glad I'm doing it (the exercise, not the chemo).

I'm a bit of a compulsive researcher so I know roughly what I'm in for, but the hair loss thing is still freaking me out. 

Is anyone else getting herceptin? I am going to have 6 doses of Cytoxan, Taxotere, and Herceptin every three weeks....then radiation for six weeks. Herceptin is for one year because I'm Her2+. I have read good and bad things about this drug.

I thought the trip to the oncologist was going to be a breeze from what my surgeon said but I suppose pathology is not his specialty or he was being optimistic. I came away from that visit in shock and am still having a tough time accepting that I have to do chemo. It's almost like when I found out I had cancer and couldn't really believe it was happening to me. Its so scary and I'm freaking out almost every day but holding it together for the family. Maybe I will be more accepting after the first dose.

Hi Ladies,

I am a June girl too.  I will be getting my port sometime next week and plan to start AC followed by T on June 4th.  I am triple negative- is anyone else triple negative?  I had one positive intramammary node but my sentinal nodes were negative so I opted not to have further surgery on the advice of 4 different surgeons.  I am scared but ready.  I have my wig appt tomorrow.  I am getting a real hair wig so tomorrow they will be looking at my hair color and will color the wig to match with highlights.  I will go back when ready to have my head shaved and then the wig will be cut to look like my hair.  I live in WA state and we don't get very hot summers so hopefully I will be able to wear it with ease. 

Hi all,

Unfortunately, I am also joining the June '08 club. I am starting treatment on June 3rd and I am pretty nervous about it. I also went to meet with my oncologist with a positive attitude and left feeling depressed and scared (nothing to do with his demeanor). It's amazing how long it took for the "poop to hit the fan." My family was wondering when this would happen as I have been so upbeat until now and got through my bilateral mast with flying colors, etc.

My regimen is for tc x 6, every 2 weeks (!). My onc also said that we would stop at 4 if I could not tolerate more. It seems like everywhere I look on these boards, I read about TC x 4 and so I am puzzled as to why he is saying 6. My tumor was 1.8 cm. and I had 2 positive nodes out of 12. The tumor was Grade 3 though, which he said was a little out of whack considering my ER/PR+ and Her2Nu - status. I did not have an Oncotype DX test--is this not for those who do not have + nodes?

I already have it in my mind that I am stopping at 4 even though he said to "count on 6." Is that wrong of me??!

I have bought some hats and just ordered a "short fall" wig to wear under them. I am still in search of a nice looking, reasonably priced full wig.

Anyone out here receiving treatment in NJ? Anyone familiar with Dr. Fein in Somerset?

Dawn

Hi all,

I'm starting chemo June 5th; 4 rounds of AC + herceptin.  Up until last Friday my hair was almost to my waist, so I had it cut into a shaggy bob, just below chin length, so that shaving it all off won't be such a big shock.  I have been feeling fairly positive and calm so far, but got a bit depressed trying on wigs today.  I really thought I'd look better. They were all so poofy and made me look like I have a huge forehead. The wig fitter reassured me that they do "loosen up" and flatten out, especially when you don't have any hair hiding underneath.  I finally found one I feel "almost me" in.  I hope hat shopping is more fun!

StaceyR, I think I'm in the same exercise trial as you, but out in Vancouver; I was randomized into the "high" intensity group, which means I will be doing 45 to 60 min of cardio 3 x a week.  Yikes!  I am normally fairly active so I jumped at the chance to do this.   I hope it is doable.  I met some of the women already in the program and they seemed to be handling it.  One said the gym has been her sanctuary.  Most women take off their wigs to exercise, and they look suprisingly good!  

Thanks to everyone for sharing their tips and experiences.  Good luck to you all!