January 2013 chemo group

Skigirl72

I have that strange heavy feeling in my chest too. I take a prilosec daily. It feels like I just havent been doing much so I haven't excersized my lungs too much...I feel a bit fuzzy with all the meds so time is flying by. I am taking all my meds exactly when I'm supposed to. I am a big fan of the Ativan. Slept like a rock. I was not uncomfortable with the new port or still nervous about my insisions. Still woke up groggy, but, I didn't have anywhere to go. lol I went for a walk. That felt good. I am gong to try to help my son build a snowman tomorrow. We will see how that goes... 

Glad everyone seems to be feeling well...

Have a great evening Ladies!!

lawgirljenn

Hi ladies,

I'm trying to get caught up on all the threads.  I had my first chemo yesterday (1/4).  I'm getting AC chemo 4 courses every two weeks and then Taxol four courses every two weeks.  They didn't tell me I was scheduled for chemo on the 4th, so that was a huge shock. Luckily, my bestie was able to rush up to be with me.  I got my Neustala shot today.  So far I'm just really tired and slightly nauseous.  No bone pain yet.  I did get a sinus headache from the Cytoxan, but Claritin got rid of that quickly.  I just feel very blah.  My MO said no working out for three days post chemo.  I'm hoping to feel up to a jog on Monday. 

Hope all of you ladies are doing well.

Lauren15

This may sound crazy, but I want to stay organized and get to know all of you.  I really don't want to go through ALL the posts from the beginning to get a history.  Would all of you send me a personal post with the date you started chem or the date you plan on starting; your individual cocktail of choice, and cancer details, and where you live.  There are so many new people, and I'm jealous of Bryona who seem to be so organized and on top of everything!!!  Hope you don't mind.  If I'm as organized as I'd like to get, then I can email a list of what I did to everyone on the list.  Does that sound crazy to you?  Is anyone keeping track and has this info already?  I don't want to re-create the wheel so to speak.  -- then I'm going to try to list all the tips that we are sharing.  Maybe I'm just getting overwhelmed since i didn't start yet, and still have so many hurdles to jump.  Will I be ok to get chemo on Thursday right after getting the port on Wednesday?  Won't I be sore?

Skigirl72

Lauren15-I had my port put in on wednesday and chemo friday. Use the numbing cream they gave you and it might hurt abit from them pushing on it for a few seconds. After the needle is all in I was much more comfortable. You will feel some discomfort from the swelling but it will pass...

lawgirljenn- I am on the same cocktail as you. I've been blah also. Just really tired my brain has been slow too. I guess foggy is the right term. My AC is 3 weeks apart so I wont need the Neustaia shot unless my counts dont bounce back. The cytoxan gave me a funny burning feeling in my sinuses. So, yup claritin helped. I read on this thread about regular claritin helped with bone pain too... worth a look.

Good night ladies!

MandyNJ

Hi everyone. I went wig shopping today just to see what was out there. I wound up leaving with one. I bought a rather expensive one. It's a human and synthetic blend. It looks like me after I've been styled at the salon before I go screw it up because I can't do it like the stylist . It is quite a bit lighter in color than my hair but I thought, why not. I brought my mother, my mother in law, and my sister in law, and they all agreed this looked the best. I couldn't find a wedding dress until they were all with me so I've learned my lesson and just bring them with me at the beginning.



I also picked up biotene and flushable wipes per suggestions from the boards. Looked at Claritin and my eyes bugged out from the price and decided to wait for another day.



Hope everyone is feeling well and enjoying the weekend.

MandyNJ

Lauren15 - my surgeon said I can get the port installed in her office and to right to my first treatment if I want. Friends said to use the numbing cream as it can hurt to inject the chemo. hope that helps.

Bryona

• chemo treatment: happy hour, bellying up to the bar

vas4554 and karenneedshope, ciao bellas! I'm glad you found us. The fact that so many amazing women are going through this makes me angry, but the fact that we have this group of really amazing women (did I already say that? I did? I must have meant it!) makes me feel lucky, lucky, lucky.

Zorina, so glad to hear that everyone was listening to you. I hope my people are the same, but hearing how easily they fixed small problems makes me feel much better about saying something above a mutter. Thanks!

skimommi, why do you cringe to tell us you feel good? I think it's fan-freaking-tastic!

Lauren, I think it's an awesome idea! (Of course, I'm clearly crazy, so that's probably not a surprise.) As for me, I'm not organized so much as obsessive. We have so many people, and I'm so afraid of forgetting something that I've been making a little calendar taking little notes so I can keep you all straight, too. I figure it's tough enough to get to know people as it is, but with my brain being fried since dx, and not having any faces to put names to, and looking forward to chemo brain... well, I need all the help I can get! Anyway, if you PM me your email address, I'll send you what I have so far.

I wonder what the appropriate farewell is for a bunch of beautiful Italian women leaving a bar...

Bryona

Hey, my bullets disappeared! Here they are again:

• chemo treatment: bellying up to the bar, happy hour
• Adriamycin: red wine, strawberry daquiri
• Cytoxan: vodka

What else?

Stupid technology.

Rhonda2

My surgery was Dec 28th and I don't start chemo until Jan 24th. Anyone else take that long to start chemo?

Bryona

Rhonda, ciao bella! My BS said I'd have to wait 4 weeks after surgery to start chemo, so your timeline sounds about right to me. I'm actually not able to start until 5 weeks because of problems with scheduling with my MO (she's worth waiting for!), and I asked if I should see her partner instead so that I can start at 4 weeks; BS said that I was fine waiting the extra week. 

LeeA

MandyNJ - re: Claritin - I'm not sure if you have Costco in your area but we buy generic Claritin there and it's ridiculously low-priced.  A bottle lasts us about a year.  Re: the port - wow, that's great.  I had to have mine installed by a thoracic surgeon with general anesthesia.  Also, glad to hear you found a wig that you like.

Rhonda, I had a BMX on November 7 and didn't start chemo until January 2.  

Bryona - do you have a firm start date yet?  

Zorina

Sounds like last week's first rounders made it through the chemo with gold medals.  In retrospect, the anxiety of the unknown and worrying were more stressful than the treatment itself.  My Doc asked if I was ready to start. I said was ready to finish, so I had better start now.  Anyone starting next week, you will do just a well.  It helps to laugh..in my Doc's medical information they advised that knife juggling during chemo is not permitted.   

Chemo Treatment 1:  Day Two

I feel a little weird from the Emend and Dexo, but I have had no troubles eating or sleeping. A little acid-reflux, but that is easily addressed and seems to get worse after taking my Emend/Dexo cocktail. Yeah, No cold sweats the second night!  I had a bit of a fibromyalgia-flare but just took Tylenol during the day.  Hubby drew a hot bath for me in the evening (no glass of wine--boo!), but I do think the hot bath helped me fall asleep as well as addressing the flare.

I will slay my next dragon tomorrow:  Neulasta.

Have a great Sunday, and think of something wonderful to celebrate today!

Skigirl72

ANy one have any cookbooks for cancer? i would love to download it on to my kindle...

karenneedshope

Hi Rhonda2 - Yep - your timeline sounds right. I didn't start treatment for 6 weeks after surgery. They really want you to heal thoroughly before starting chemo. They assured me that that short period of time wont affect us. Hang in there and good luck!! Karen

Rhonda2

Thanks for the confirmation that I'm on the right time-line for chemo.

Skibunny

Hello January Girls!

I just wanted to pop in and wish you all luck, tell you it is all doable and not nearly as bad/scary as you imagine it will be and that life will get good again.

I've written a blog with tips and hints for dealing with chemo, beauty tips, tips for those using the cold cap etc. If you'd like to have a look, please click here: http://chemoforbeginners.com/

You're one step closer to the end. Sending you all best wishes.

x

MamaK16

Hi.

I was told to wait at least 2 weeks between port placement and starting chemo, that way if there are problems (like infection), you can treat it easier.  Plus, my port is still tender a week later---just something else to worry about.  I would rather have it "settled in" before all that comes with chemo. 

LauraAnne112012

Hi girls,

So glad to find this thread and join the group. I had a bilateral mastectomy in November and was told on Friday I will start chemo soon. I had immediate reconstruction and tissue expander's placed during surgery. Now I'm wondering how this will affect the fill process and port placement? Does anyone else have tissue expander's going through chemo? any advice?

LeeA

Yes, I have tissue expanders. Make sure you tell your port surgeon that you have tissue expanders (the tissue expanders include a magnet as part of their structure).



My port is just below my right collarbone. Also, my chemo was delayed due to an infection.

karenneedshope

Hi LauraAnne11 - I had a double mastectomy in November too! I too had immediate reconstruction and tissue expanders placed during surgery and have had one fill thus far. I had to wait on the fill because I got an infection on the right side after the drains were removed. I had a port placement two weeks before I started chemo on December 28. I was happy for the two weeks for the mediport to heal - the incision was sore and the area was tender. By the time I had my first chemo it was soooo much better. I was given lidocaine cream to smear over the port to numb the area and that was a huge help. There wasn't any issue for me with having chemo and fills - no restriction there. THe only advice I would give on that is to try to stagger the fill week and chemo weeks. I had the fill two days before chemo and I was so uncomfortable and sore that it made sleeping a bit challenging. Next time I'm going to do a better job spacing them out - maybe 5-6 days apart. It is good to connect with you - sounds like we're on a treatment time table!! Best wishes to you!!

ziffy321

Bryona--your description of Adriamycin as red wine or strawberry daiquiri reminded me of an incident shortly after my first go-round with chemo.  I was at a cafe and ordered a raspberry soda.  It came in a clear plastic cup and was EXACTLY the same color as the drug.  I took one look at it, and had to send it back!  It was months before I could drink one again. 

hope49

Just want to wish everyone a good week!  I have my first round of chemo on Thursday and am busy putting together all the supplies I may need.  I anxious to get started so I can get finished.  Here's a thought to sleep on tonight...

"Make the rest of your life the best of your life"

Prayers to all!

Lauren15

I bought my wig today.  It's a hand tied Racquel (whatever that means), but I like it better than my hair

How is everyone feeling?  For everyone who have already started chemo and are working still, how is it going?  Miss any days?  If so, which days are worse after the chemo?  I need to work out a schedule.

ablydec

I'm starting this week also (TC-H).  I am planning to have my chemo on Fridays (I don't work Fridays anyway) and kind of hoping that by Monday I'm feeling well enough to go back to work.  I know it's not predictable which days will be hard, but I have to guess SOMETHING, so I decided to just hope for the best.  If there is any predictability to which are the hard days, I would also like to hear it.  Knowing, of course, that "everybody is different".

P.S.  What is this that people are doing with their nails?  I feel like people are doing an awful lot of preparation, and besides the meds (decadron?) that were prescribed for the day before and after, I'm not doing anything special.  Should I be??

NOTE:  For those who are looking for a very natural-looking wig, and willing to spend for it, and live in the NY metropolitan area... you should be aware that Orthodox Jewish married women cover their hair all the time.  Most wear wigs, and many are extremely well-made.  My own nurse-practitioner couldn't believe that I was wearing a wig.  (I have been wearing one, for religious reasons, for 28 years.)  I found myself thinking, "If the patients she sees don't have wigs that look like this, someone should tell them to check out some of the wig salons in Brooklyn!"

LeeA

I no longer work but thought I would pass this along - 

My port surgeon said he never missed a day of work while he was having chemo.  

---

ablydec - that's really interesting about the wigs!

ablydec

I'm so happy to hear what your surgeon said about not missing work.  I work as a child psychologist, and I really don't want to be unreliable for the kids.  Of course, I realize I have to (as everyone says) "take care of my health first", but for me, being active and busy in meaningful work IS part of taking care of my health!

Lauren15

Ablydec - so funny, when I put on the wigs, I felt like I was wearing a sheitel (wig) and that I looked orthodox.  My husband is going to give me wispy bangs so it looks less like one.  For some reason in South Florida we are limited in places to shop for one - I had to go to a better quality flea market.  Ugh! 

Pet Question:  Are there any problems letting my dogs sleep with me or playing with my parrot while I'm on chemo?  Someone told me today to stay away from them in case they carry germs.  I never heard of that!

SherylB

skimommi, I take melatonin to help me sleep sometimes (I take 10mg because I need more of everything it seems), and it works pretty good for me and I have never been a good sleeper.

Recent hospitalization on the oncology floor and a nurse who has worked onc. for >30 years told me to do the baking soda, salt, and water rinses prior to chemo to help prevent the mouth sores. Rinse 3-4 times daily. The mix I have read about is 1:1 in 8 oz of water but better research that a bit not sure if I remember it correctly.

I really love the posting of stopping by the bar.... to funny.

Take care, Sheryl

SherylB

Buy the claritin generic. It is not very expensive at Walmart.

S

SherylB

hope49,

I start chemo Thursday too. We will tackle the beast together.

Sheryl