Advice needed urgently!! pls. help!

@suzilla, I am doing CMF not AC/T like you are, but I do have some fatigue. I just wanted to say, as far as I am concerned it is totally normal sometimes to cry just out of sheer tiredness. Also, I have not finished my chemotherapy yet but I hear it can take quite a long while afterwards for energy levels to return to what they were pre-chemo. So don't push yourself too hard, too soon when you do finish.

Meanwhile I am sending you a ((hug)). I hope you are feeling better today.

I did dose-dense AC+T with a Neulasta injection two days after every round.  I didn't have the problems with the antinauseants that you did, but they did leave me with a bit of a steriod-hangover after "coming down".

Chemotherapy itself I didn't find problematic, but boy-oh-boy did I struggle with the side effects from the Neulasta injection: bone-, muscle- and joint pain were the worst.  The pain would kick in 48- to 72 hours after the injection and - at first - it would last a day or two at the very most.  But as treatment progressed, the pain would kick in fast and last longer.  It felt like my bones were made of napalm.  Unfortunately, you can't do dose-dense chemotherapy without the Neulasta injection; the two go hand-in-hand, so if you want to stay on a dose-dense regimen, that is the price.

With the AC portion of chemotherapy, my main experience was lightheadedness, headache and hot flashes.  The lightheadedness would begin before I was even finished the cytoxan IV; the headache would flatten me about two hours after returning home.  With my oncologist's approval, I started taking one of the Tylenol 4's she prescribed for me about two hours prior to having the round; it helped a great deal.  The hot flashes were because chemotherapy was shunting me into menopause.  Some of the ladies here refer to it as "chemopause".

I didn't experience any neuropathy until I started taxol and, then, I noticed the hands/feet tingling almost right away.  The effect on my hands was minimal; my feet took the brunt of it.  Be very, very careful with hot- and cold with your hands/feet at this time.  They will be ultra sensitive and even the smallest changes in temperature may be enough to set off moderate- to severe pain.  I found that - during the cold months - I couldn't even wander around in the house in just my socks; my feet would soak up cold from the floor and start up a howl.  They'd also "scream" if my bathwater was more than tepid.  And be very careful with your feet; try really hard not to stub your toe or drop anything on them.  I can't begin to describe the pain I felt when I dropped an apple on my foot one day.  So pamper your hands and feet as much as you can!

Remember when reading about things like this, if something works well without problems, we don't think about it much, but if it causes issues or doesn't work we will voice that. Don't let the number of good stories vs the number of bad stories influence you to much.

ClaritinD taken 24 hrs prior to Nuelasta and then 2 days after will greatly help/alleviate joint pain. I know it sounds crazy, but it works for most. Taxol was much better for me than AC. Not a walk in the park, but better.

hap-k- I wanted to let you know that there is ongoing clinical trial to determine if taking Claritin helps prevent the pain from the Neulasta shot.  Here is the link for that clinical trial so you can read the particulars: http://clinicaltrials.gov/ct2/show/NCT01311336?term=claritin+neulasta&rank=1

The clinical trial drug protocal is to take regular 24 hour Claritin (aka Loratadine 10 mg) ( not Claritin D) once a day for 7 days beginning the day of Neulasta ( aka pegfilgrastim) treatment in patients with pegfilgrastim-induced back and leg pain during the previous treatment cycle.

I took the Claritin the morning that I would receive my afternoon shot of Neulasta and took it for 8 more days.  I did not have any Neulasta related pain which means that the Claritin worked for me.  I've also read on the boards that one can take one Tylenol and one Motrin/Advil combo every 4 to 6 hours to help with the pain. 

As for the shot itself, you may want to ask the nurse to give it to you in your tummy.  It didn't hurt when mine was given there ( thanks to my tummy fat).  The nurse told me most ask to have it in the arm but she didn't understand why since it does hurt a little when given in the arm.  The nurse always let me hold the shot before she administered it to warm it up.  Then she would inject it slowly so it wouldn't hurt.   At the first injection, I had to sit and wait for 30 minutes after I got the shot to make sure that I didn't have any kind of reaction to the shot.  After that first shot, I'd go in and get the injection and leave.

FYi:  I initially did not receive Neulasta shots after my chemo rounds.  It wasn't until I had a high spikey fever/chills episode after my second round of chemo ( 6 rounds of Cytoxan/Taxotere) and had to take 2 antibotics to get that knocked out that the Neulasta shots became necessary.  I was glad to get the shots because I knew it would help my WBC and prevent trips to the ER/hospital stays. 

Wishing you the best of luck with the rest of your chemo!!!!

Thank you, Nancy & especially Melrose, for all your advice. I very much appreciate it. 

Claritan makes me a bit edgy, but I guess I can take Benadryl at night to fight it. You gotta laugh.

 I do hate meds so much, and since the chemo started this place looks like a pharmacy. Just to get through dinner, I've got Pepcid, Beano, Gas-X, Alka-Seltzer, Lactaid, and ginger tea. For constipation: Miralax, stool softener, Sennakot, prunes, prune juice, kiwis, and walking a mile every night in the house (no treadmill). For my Tissue Expander pain: Advil & Aleve, For fever: Tylenol

Then there's all the Rx stuff they gave me for for & nausea which I didn't take (luckily didn't need).

Just have to be grateful I didn't actually end up in the ICU. Hoping Neulasta does what it's supposed to do & keeps me out of there. With your good advice & tips, I may make it yet.

Thank you! Hap

My experience, and that of my local friends was with Claritin D. If you google it you can find that there are good results with either. Hoping it works for you.

I used 24 hour Claritin during my AC (needed Neulasta) and had no problems with Neulasta. I had neupogen with my weekly Taxol tx and used it then too, again, no problems from Neulasta.  Taxol was so much easier than AC. No side affects other than some fatigue and low white count (twice). My hair started to grow back on it!

Usually they give you benedryl to avoid allergic reactions sometimes a low dose steroid too.  Do not give up. Taxol was so much better than AC. As for your mouth sores, antacids help a lot, and taking L-lysine orally helps too.  

Claire

Positive experience signing in!

I had no problems with the shot - no pain - continued to run throughout my chemo treatments.



I took one Claritin - one time and decided I didn't want to mess with it unless I needed it. Had no pain. Honestly, I know that it helps some but it may not be helping others. There have to be some like me who did not need it at all. But they'll never know because they took it preventively. On the other hand, there are those that experienced some pain, added it to their regimen, and ended up with no pain.



I'm not a martyr, nor am I anti-meds. Did my research and chose to follow a course of action that worked for me.



My onc nurse laid out a plan of taking a mega dose of Vitamin B6 to prevent neuropathy during my weekly Taxol treatments. In researching this I found that there was also evidence that an excessive amount of Vitamin B6 could actually cause neuropathy. Wow! What to do? Discussed it with my onc nurse and my onc and they were fine with me not taking it if that's the course I chose. Zero neuropathy here. So .... What if I had taken that and ended up with neuropathy? Some might have concluded that it didn't work or perhaps I would have needed more. But in actuality what would have occurred in my case, if I'd taken the B6 and developed neuropathy, would have been that the 'prevention' would have caused the condition.

So much to consider. So much to take in. And we are all so different in how our bodies respond to the chemo drugs, steroids, anti nausea drugs, shots, and supplements.



I had a great experience. You keep that hope that you will too!



One aside - I was doing so well and wrote 'no side effects' in an update to family and friends while going through the AC. When I showed up to my nephew's wedding bald, my other sil said "I didn't think you lost your hair. You said 'no side effects.'" (Nevermind that my Facebook had lots of pics with me with no hair.) ;-)

Suzilla- Sounds like you are handling the Taxol better which is good.  The nail color change/darkening is a side effect of the Ac chemo.  Here is the link on the BCO.org that discusses this side effect and how to manage them: http://www.breastcancer.org/treatment/side_effects/nail_changes . I had Cytoxan/Taxotere chemo and iced my nails upon the recommendation of my oncologist to help prevent the nail damage.  As for the pain in your toes and fingers, sounds like you have neuropathy.  Here is the BCO.org section link on neuropathy which may help: http://www.breastcancer.org/treatment/side_effects/neuropathy .  You can try wearing crocs if you can't wear your running shoes.  I always wear socks with my shoes, sneakers, etc and rarely go barefoot to help protect my feet.

There is nothing wrong with thinking about the other phases of your treatment (surgery, rads, etc.) but you have to be the one to know when to limit yourself from information overload and overwhelming yourself.  If surgery is your next stop, it is good to know what things you will need to have at hospital to make your stay better (ie bathrobe for those walks around the hospital floor after surgery, chapstick, phone, toiletries, etc)and home upon your return from your hospital stay ( ie, comfy clothes, drain holders, bed pillows/ wedge pillow).  You may want talk to the anesthesiaologist prior to surgery to get an seasickness patch to be placed behind your ear prior to surgery to help prevent post surgical anesthesia nausea.  As for rads, you may want to know what kind of creams/ointments to use to help your skin recover from the rads ( ie Miaderm, Aquafor, etc), what to wear for rads and about the rads process in general.  Again, all of this information is helpful and perhaps lessen the anxiety and fear of these phases of treatment.  I know I read the information on the BCO.org  section on treatments so I would know what each treatment entailed and found the information just enough and not overwhelming.

As for drinking, it depends on a few things.  You may want to ask your onco about drinking alcohol to see if its okay.  You may also want to look at your blood labs to make sure that your liver enzyme numbers are okay.  You may also want to consider what drugs you are taking (OTC meds/ antinausea meds/ other prescribed meds) to see if there are any drug interactions/contraindications when alcohol is introduced to the body.  Then, the next thing to consider is taste since your chemo may have changed your taste buds.    Sorry my answer may not give you a quick answer to your question but just things to consider.

Wishing you minimal side effects and a wonderful Thanksgiving for you and yours!!!!

Suzilla, hang in there!  I've had three (of six) rounds of taxatere, carboplatin and Herceptin, each followed by a Neulasta shot  The chemo has knocked me for a loop, to putit mildly.  However, I have not had the body aches many women experience with Neulasta.

For mouth sores, ask your oncologist for "magic mouthwash."  It's a compound of Mylanta, Benadryl and lidocaine. You rinse with it, and can swallow it if you need it.  This was a life saver for me.  I couldn't eat or drink anything except Coke after my first treatment, until I started with the magic mouthwash.

I've had the sores on the edge of my lips on either side of my mouth...used to call them cold sores.  The only thing that has helped is a little A and D cream.  I've tried numerous things, and just thought I'd try the A and D....it really helped immediately.

Good luck!!!!  This is a journey none of us wanted to take, but we are there to support each other!