April/May 2012 Chemo hang out

dancetrancer

Hey Lisa! I'm was confused by your ANC b/c mine is listed different, but I figured out it is just the scale, though. So, I looked up the grading system of neutropenia and here it is (I'm a bit of a research nut), thought others might find this interesting, too: 

A normal neutrophil count (also called absolute neutrophil count or ANC) is between 2500 and 5000. (I guess this is the same as 2.5 to 5.0 for how yours is reported).

•  An ANC between 1500 and 2000 (1.5 to 2)  is Grade I neutropenia

• An ANC between 1000 and 1500 (1.0 to 1.5)  is considered mild neutropenia (causing minimal risk of infection) - this is grade II

• An ANC between 500 and 1000 (.5 to 1) is considered moderate neutropenia (causing moderate risk of infection)  - this is Grade III

• An ANC less than 500 (.5)  is considered severe neutropenia (causing a severe risk of infection) - this is grade IV

So, looks like you dropped to Grade IV as well.  Wow you jumped way high with just 4 injections...that is great news!  My ANC on Thursday was 244.  I've had 3 injections so far.  

I don't have online access, but my doc gives me copies of all of my bloodwork.  I've been running a low grade fever for 9 days straight now.  All in the 99's.  However, I just took my temp, and it is 99.9 F.  I hate this.  I'm so worried about getting a neutropenic fever.  Looks like I'll be watching the temp close for the rest of the night.    Had to stop Cipro today b/c of multijoint tendonitis (severe, was in the ER last night, using crutches to get around today).  I'm having a very rough chemo experience, unfortunately.  

chapter4

C squared....I have be second treatment on Wednesday...what about you? Any trouble sleeping as well?

C-squared

chapter4- my next treatment will be May 3.  It's every two weeks.  Today is day 4 treatment 1.  Hangin' in there!

chapter4

How are you feeling on day four? I felt like I had been hit by a truck.

sgcollins

Not sure if this is the way to jump in or not, so if not, please forgive me. I had my first chemo treatment on 4/18. No vomiting, but the nausea and indigestion is killing me. Any good suggestions? 

C-squared

sgcollins- Did the doctor prescribe any compazine or Zofran?  If so, take it for the nausea.  Did they recommend Pepcid?  If so take it for the indegestion.

Anonymous

Final note on icing nails: it's not just the superficial (looks pretty ugly when they raise, turn dark and  fall off) but I understand that this condition can be pretty painful, making it hard to type and walk.  For me the short discomfort of icing trumped not being able to walk or work...

Indigestion: I took Zantac 75 (OTC) and took two per my MO's advice.  It worked very well.  I took zofran at first and didn't find it (for me) very good at reducing nausea, so I switched to promethezine with my MO's help and it worked a lot better. 

Claire

Lynnbea

Hair is starting to shed a lot. It's day 20. Went shopping for a wig on Friday.  It's rather cute but I don't know if I can stand it on my head for very long.

TC #2 on Monday morning. Neulasta on Tuesday. Need to remember to ask nurse about Claritin. I had a week of body aches after the last shot.

Best wishes to all for a pleasant weekend with little SEs. 

dancetrancer

sgcollins - I second the recommendation for Zofran or something similar.  I had severe indigestion day 7 post chemo, and in part I believe it was because I was trying to wean from Zofran too soon.  I was already on prescription Prilosec, and it wasn't even cutting it (I have a history of severe acid reflux).  Doc told me to take the Zofran every 6 hours even with no sx for 2 or 3 more days.  He changed my Prilosec to Protonix (says it is stronger) and gave me "magic mouthwash" which is nasty but has Nystatin (for thrush) but also lidocaine (for pain - makes your mouth numb for a few minutes - hated that but it worked), benadryl (for inflammation of the mouth/esophagus), and maalox (for acid in stomach).  You gargle and then swallow.  With those 3 changes (Zofran regular, Protonix, magic mouthwash) my indigestion was remarkably improved.  I am now off the Zofran and mouthwash and have only occasional indigestion for which I add a Pepcid to my routine now and again.  

He also had me start probiotics which helped my slowed GI system start moving things along...I think that helped also b/c if you can't move food through your system, it increases the amount of reflux that pushes up your esophagus.  

Don't suffer with this, it's awful.  Get your doc to make some changes for you!  It can be managed!

Lynnbea - if you do the Claritin make sure you get it in your system BEFORE the Neulasta shot (I took it a few hours ahead).   

dancetrancer

LisaG65 - will you be doing neupogen the day after chemo prophylactically this time?  Any changes to your chemo regimen being made due to the severity of the neutropenia?

IndigoMont11

Day 3 after treatment, got up to take morning meds on time. Then decided to eat something first and give my elderly arthritic chow mix her morning meds while I ate, so I could have food in my stomach and concentrate on just one of us at a time. She takes four kinds of meds a day. For the time being, at least, I take five or six.



I took my claritin (no neulasta yet but I've had allergy trouble anyway), lined up all my little bottles, glad I could toss the decadron and emend after these last doses. Then on to zofran and tramadol. Done! Whoops, oh, no - I realized I took not one but two claritin! I thought about bringing them up but there'd be no way to replace the other meds here on a Sunday. And I didn't want to throw up anyway. I read the warning on the package and it said exceeding the normal dose can cause drowsiness. If that counterbalances the decadron, maybe I won't be so hyper today.



At least I didn't get the dog's pills mixed up with mine!!!



But even in my worst days of allergies and asthma growing up in rural Missouri, I have never been on so much medicine in my life. I think maybe one of those pill organizer thingys might be in my future at this rate.



Just glad after today that I don't have to to take three of them till next cycle. Only compazine if I still have any nauses trouble, which hopefully I won't.

velutha

Neupogen:  I did my injections at home, there was no "let's check your counts and see" for my DD a/c, we just did the whole series of injections after each cycle starting with treatment #1.  My MO doesn't monitor your nadir after the first cycle if your counts are normal, unless you have symptoms of infection.  I like this psychologicaly -less blood draws, less thinking about my numbers is good, IMHO.  I never had to go into the office for the shots, they were delivered, I kept them in the fridge.  Bone pain was annoying round day 10 or so of cycles 2 and 3, especially when I walked.  Counts have been normal throughout taxol, though I'm still anemic.

Probiotics: I don't see the point, for myself, given that I have chemo weekly, I figure I'm just destroying any happy bacteria as soon as they grow.  I do agree that nausea is multifactorial, and sometimes it's thrush/heartburn/constipation/lack of saliva.....so keep trying things till you find what works for you.  Those of you who are new-ish, I repeat previous advice: do NOT sit at home and suffer!  Call your MO and complain, change your routine to minimize nausea triggers (ie don't cook or hang out in smelly places).  No one should be vomiting their way through chemo.

Zofran can cause headache, I think all the anti-emetics can.  There's a new zofran-like medication called emend, I used it IV with my a/c and it was magic -the pills gave me a killer headache, but IV didn't.  Never had nausea till it wore off.  Be aware, with zofran, taking extra doesn't make any difference (as far as killing the nausea), so if it's not working within an hour, it probably won't work for you, try something else.

klepine

I have not been able to post for awhile.  My last treatment hit me pretty hard.  My hair started to hurt and began falling out so I decided to take the plunge and Saturday I had it shaved.  I had a pretty emotional day on Friday a good cry.  Saturday was actually much better, I really didn't like seeing the hair on my pillow, it was actually harder than seeing myself bald. 

I am glad the sun is shining today, I plan to sit outside and just enjoy the sun!!!!  Happy Sunday to everyone!! 

nfranklin

Well my hair started coming out on day 13. I will have my 3rd Taxol treatment on Monday. I am getting the big chop today, my husband is going to cut it. I think I am finally getting over a cold I have had all week. Feeling pretty good today..

7donatela81

I had my TCH Monday and did ok till Thursday,  I took the compazine but I had cramping and diarrhea.  Been taking Immodium for that. I haven't felt like eating until today.

 Are any of you on just Herceptin for the weeks between chemo?  I have that tomorrow and wondered what effects I might have.  I know abut the heart risks but wondered about the rest.

momand2kids

Ladies

I just wanted to visit and let  you know that you can indeed do this... and that there IS life on the other side.

I honestly thought I would never last through chemo, but I did... and it was not nearly as I imagined it--I won't say it was easy, but it was not as terrible as I thought it would be... I was able to work most of the time and show up when my kids needed me.  As I look back now, I think I would not have "tried" so hard to be "on" all the time....

As for hair, I know that I really wanted to know how long it would take for it to grow back--- so I always tell people, I had it shaved on 1/22/09 and finally took my wig off on 6/27/09 when I had about an inch of hair... then it grew back in beautiful curls.... I really loved it....it has since straightened out and is my regular hair (which I also love) from before.  

 I found following all of the nurse's instructions for anti-nauseau meds worked for me.... my chemo was quick- 4 x over 8 weeks, but in the middle of it, it felt like it would never end....but it does, and your life resumes....

One thing a friend told me was that it takes until about a year after the end of active treatement to really feel like yourself.  Chemo makes you tired and if you have radiation, that can be really tiring.... and I found she was right-- at the 1 year mark, I felt my energy back and at the 2 year mark, I really felt fabulous--- and I still do as I approach the 3 year end of treatment mark.

 Take good care of yourself-- I loved eating pasta and Cream of Wheat (not together)..... I found that the biggest problem for me was low level nauseau---

Everyone experiences this differently and it is great to get support here-- just remember, that it is YOUR chemo treatment and that can be different than others......

You can do it, and it will be over before you even realize it!!

  

sandik

Thanks Mom! :-) Hearing the good stories helps. Still waiting to hear when I start. Really really want to get moving and get it over with! I do my look good feel better thing tomorrow night. DD and her friend are going with me.

LisaG65

i start my neupogen 1 week after chemo. dr want to see how low it went, we started shots and i was suprised to see how low the count actually was, because i felt great. everyone told me i was glowing, even after i cut my hair. so i just took more precautions with hand washing etc...not being in a crowd.... im sure when i see my onc. this tues for round # 2, we will talk about how things went. i trust him completely. he is very open and usually answers my question before i have to ask.

 i do everything i every did, but with a little more caution. i try not worry about getting sick/fever, if it happens i will deal with it. they said they would call in anti biotics if that were to happen. but i refuse to worry. it will eat you up. i am doing everything i possible can to take care of myself, and my mind not letting your mind worry will really help all of us. have the best of thoughts.

i am positive and taking this all in as i go, i am flushing the chemo out of my body as fast as i can with water and green tea kombucha decaf, exercise, sunlight and meditation daily. music in my ears never sound so good as it does sitting on the beach.

everyday i am taking green vibrance its made by vibrant health. it has 25 billion probiotics per dose. i mix it with 8 oz of coconut water and slam it down. i take 1000msg of methylcobalamin b12 sublingual, 3 total turmeric curcumin 95 capsules, 1 super k with k2 complex by life extention, 1000 mg L-Lysine, 4-6 caps of chlrophyl complex, and 2000 mg of omega fish oil, 5000 msg of vitamin D-3. i have added raw nuts to my diet, sunflower/pumpkin seed as well and plenty of green vegetables.

 i have had minimal side effects. maybe 2 days in i was constipated or had mild diarrhea for 2 days max,nothing extreme and i got a handle on it quick. thats the chemo being flushed from your body, anything you can do to help it along the faster you will feel better i havent experienced nausea yet. i have meds here if i need them. i go one day at a time, minute by minute even. i am on this chemo ride, but making it as pleasant as i can for myself. i am sure there may be bumps. every time you get chemo the SE may or may not be the same. i will take it as it comes the best way i know how. smiling!!!

LisaG65

@mom great post!! thanks, so well said!

dancetrancer

7donatela81, that cramping is quite painful, at least it was for me.   I'm getting the Herceptin every 3 weeks, but I am thinking of asking to switch to weekly (pretty sure my onc will be ok with this).  I just have a feeling that it will make my chemo SE less intense (esp the WBC part, Herceptin is known to lower it as well).  I also talked to some gals who said anecdotally that doing it weekly might make it take less toll on the heart in the long run.  No evidence for it, but, I figured if I can swing it w/my schedule, why not.  

momand2kids - thank you for the encouragement!!!  

thanks lisaG65  :-)  

barbyjean

Hi ladies. I posted earlier as an "experienced" gal -- I am done with treatment. My chemo was 6 rounds of T/C from Oct. thru Jan., followed by radiation. 

I took oral dexamethasone for 3 days each chemo. I didn't like how it made me feel at all, but it prevented an allergic reaction, and nausea, so I was willing to put up with it. The zofran can cause headaches, so talk to your MO about another nausea drug to try. The watering eyes were one of my SE's, and I didn't really find anything that helped. They got much worse at the end, but now are just a faint memory. 

I had plenty of other side effects, and the only one that still is around is the funny fingernails. I didn't use ice during chemo. They never fell off, but they separated and are growing out just fine.

You are on a wild ride with chemo, so pamper yourself and keep a positive attitude. You will get through it a day at a time.   

Hope you all have a good week!

Barb 

fairweather9

Hi Ladies,

I have had the wildest last few days, between the doctorsvisits, scans and phone calls from all the friends, family, doctors and disability people we somehow found time to shop and get a recliner for me to hangout in for the next few months .  Got a nice throw for it and found someone to take the old sofa away.  Got the super to do some odds and ends around the apartment and am working on setting up our cleaning lady to come 2 half days a week instead of her normal twice a month.  My head is spinning I just want to get this crap started but I want to do it from my comfy new love seat recliner LOL.  I am taking barbyjeans advice to heart, pamper myself and try to have a positive attitude now while I'm not hurling into a bucket, which reminds me to put bucket on the list, so to speak..  I also want to mention I have the best wife in the world I could not do this without her at my side.  Also found time to get my pre chemo hair cut, now when it starts to come out it wont be longer than the cats.

lisak7290

I have my last chemo on Tuesday..I have been told that I'll be on tamoxifen after that..

How soon will I start the Tamoxifen?

What happens now?

IndigoMont11

Thanks barb! It all helps.... :-)

Melrosemelrose

lisak7290- I haven't started my chemo yet but I did ask my onco about when I would start Tamoxifin after completing my last round of chemo. I was told, the start date would be three weeks after my last chemo since I have a 3 week recovery period between infusions.  Sounds like it depends on what chemo drug you are on and the time period between each infusion and what the normal recovery period is for your chemo.

Stacie

I hate the way wigs, scarves, or hats feel on my bald head so I've gone bald all day. I posted a pic of me and hubby bald on fb and 100+ people commented/liked it I am so touched. In Whole Foods a woman who spoke some english approached me for advice on nutrition saying she was just diagnosed. My husband teared up overhearing. If I had not been bald I couldn't be helpful. I call it my "F it" look. Chemo #2 tomorrow.

Melrosemelrose

BARBYJEAN, VELUTHA & CLAIRE--  THANK YOU FOR SHARING YOUR EXPERIENCE WITH US AND PLEASE KEEP COMING BACK WITH YOUR WORDS OF ENCOURAGEMENT AND HELPFUL TIPS.  Each of you helps build our confidence in handling our chemo and reassures all that we can do this!!!!  Love to each of you and giant hugs of thanks for caring.

Melrosemelrose

Stacie- Good luck on #2.  I'll be having the #1 infusion on Tuesday. 

The goal for the week--- MINIMAL & MANAGEABLE SE' S!!

IndigoMont11

Stacie, you rock! Thinking about you for tomorrow.



Sandik, hope you enjoy your LGFB class.



Melrose, hope you enjoyed your weekend. We'll be with you in the chemo lounge tomorrow.



And I second what you said to the "trailblazers" (Mom, that includes you) - thanks for all the encouragement! It's never too much.

Melrosemelrose

IndigoMont11- Yep, I'll be posting tomorrow the day before the infusion to let you know how bonkers I get from the Decadron I take the day before chemo.  Got my exercise bike all set up so I am ready to ride!!!