Starting Chemo Aug 09

YoYo44

Hi ladies,

Wow, it's hard to believe it is almost October.  Our "journey" has progressed a long way already.  Yes, we are old hands now I guess.  It seems so long ago when I started off and was scared and worried about starting/not starting treatment.  One foot in front of the other and we will keep going.  I have been trying to read the messages when I can but there is so little time left in the day with a shortened work week and trying to get to bed early as much as possible.

My MIL was here all last week so that was wonderful; she helped out so much with meals and caring for my son.  A nice break for us all.  Here in Canada we have Thanksgiving when you foks in the US have Columbus day so we are looking foreward to that.  It should also be my 12th TX, assuming that is what the doc plans.

So it seems my feet did not get the memo about no SE's.  At TX#8 I finally got some neuropathy, although it faded before the next TX.  But now I have had it since the last TX.  My doc has not given me the OK to take anything although I bought some L-glutamine to start taking the minute I can try it.  It is not bad, just tiring to walk much.  Sitting it is OK but standing or walking I really feel it.  I have been wearing a pair of really cushy flip flops and they help cushion my feet.  Thin soled shoes are a killer.  So I am hoping it doesn't get much worse.  At week 11 I have an appointment with the doc so we shall see what he is thinking as far as more chemo, surgery or whatever.

All the best to everyone. Keep up your strength, we are getting there.  We're women, we're tough!  Ain't no cancer beating us!  Have a great day everyone!

Melinda-Tma3

YoYo..From the Septembers group but saw your message...My husband has been giving me hard massages on the bottoms of my feet when the numb/pain comes along...Usually when I sit down though it's worst.  Anyways, a strong massage really working all the pads of the feet, sides and arch.  I really has helped me tremendously! Hope it can create some comfort for you in between! 

Melinda 

weety

Jenn3,

Uh-oh.  I have a sore spot on the inside of my bottom lip after TCH treatment #2.  Is this how your mouth sores began?

JanetH77

I am part of this group even though my first chemo was 7/28.  I had my last chemo today -- taxotere/carboplatin x4.  I had terrible mouth burn (not sores exactly) after the first treatment.  I used the Biotene mouthwash, Oragel for mouth sores, and Ulcer Ease mouth anesthetic, all products listed on my care sheets.  I still had eight days of mouth discomfort.  My oncologist told me to keep ice chips in my mouth all through the infusion of the two chemo drugs.  I did.  I also continued the ice chips the rest of the day on the chemo day and anytime I felt some burning sensation in my mouth.  I rinsed with Biotene during the day and used the Oragel for mouth sores last thing at night.  I had no further mouth problems after the second and third treatments, will see what happens with today's treatment #4.

I haven't read everything in this thread, so please forgive me if I am repeating what others have said.  My care sheets indicated I should take 1000 mg. of vitamin B6 daily for neuropathy (tingling) of the fingers and feet.  I have had slight tingling on the bottoms of my feet, but only slight.  My oncologist told me today to continue the daily B6 for several months after chemo.  Even if the neuropathy does occur, it will eventually go away.  Damanged nerve endings regenerate at a very slow rate, so it could take a year for the tingling to stop.

I have gained so much help from these forums, especially from the pre-chemo shopping list.  This is a gutsy group of dudettes!  Keep on!

buccaneersdj

Welcome Lilah!

JanetH77- I also do the ice chips thru chemo and have not had a mouth sore problem (knock on wood). If you or having problems with this give it a try!

I hope everyone who got chemo last week is feeling better by now! I go tomorrow for tx #4 (TAC). I feel great today so far I definatly have a pattern with chemo, week 1, nausea and tired; week 2, feel pretty good eating like a pig; week 3 feel great until about 4 days before next chemo, get nausea and bummed out I think this is in anticipation of feeling crappy again, meaning I think it's in my head!

I am so sick of feeling sick! After tomorrow I have 2 more treatments then radiation and can't wait till it's over. My tumor was Her2 +1  you should be Her2 +2 to be considered possitive so my onc. ordered a FISH test which my insurance company promptly denied. I am officially a TN, now she (onc.) is saying she might want to do Herceptin for a year (ugh!) as a precaution. I am glad my onc. is aggressive but I don't know about this. Does anyone have any input on this please let me know your thoughts!

buccaneersdj

JanetH77- Congratulations on finishing chemo!!!!!! I'm happy for you!

buccaneersdj

JanetH77- Congratulations on finishing chemo!!!!!! I'm happy for you!

buccaneersdj

Wow, so happy I posted twice, lol!

unklezwifeonty

Dear Buccaneersdj,

I don't know if Herceptin would help with Her2  value of 1. It may although officially the cut off is 2 and borderline is 1.8 to 2.2. I'd recommend a second opinion. Also if your insurance denied the FISH test, are they going to allow Herceptin?

jenn3

Good afternoon - Well today I was due to start my Taxol, but my trial drug was not ordered in error so I have to wait until Friday. Apparently the pharmacist read the trial protocol wrong and didn't realize it had to be ordered after I finished the AC portion of my treatment.  My RBC and Hemoglobins dropped again, which explains my complete exhaustion, but the good side is that they've finally dropped low enough that my insurance will allow me to get the Procrit shot.  Procrit helps increase RBC production in the bone marrow and hopefully within a few weeks I'll start to regain some energy. 

Janet - My mouth sores actually started in my throat and moved to the back of my mouth.  However, I haven't had mouth sores in a while, but still am sensitive to spices, carbonated soft drinks and such.  I did suck on ice chips the entire time they did the AC push.

Donna - I was talking to the dr today about finishing the AC and starting Taxol.  I am having anxiety because I know the routine of how I'll feel with the AC (as bad as it's been) and am afraid of starting something new.  I am a Triple Negative and from I've been told HER- medications don't offer benefits to TNBC patients.  You may want to research it more or put the question on the Triple Neg board - there are a lot of women on that site that may be able to help you.  And I just have to say...............I can't wait for this crap to be over with!!!

Unklez - I am in the trial you posted information on and did talk to the doctor today about it. Thank you for the information - I was glad to have been informed about it before they pulled out their paperwork.    I elected to stay in it because I am past AC treatment mixed with the trial drug which is what they are reviewing and all of my heart scans and function test came back fine - no changes from my initial testing done before chemo.  I am a little worried and am still doing to do some more research because I can of course still elect to drop out if I feel uncomfortable about it.

YoYo - I getting ready to start Taxol and I sure hope I don't have the SE with the feet and hands.  It sounds painful.  I'm so glad you had your Mom helping out, it does give us a sense of relief that someone else is there to take over.  My Mom and MIL have been wonderful.

Well my daughter is home from school and I want to visit see how her day was.  Hope everyone has a wonderful afternoon. 

gillyone

Jenn, I just had my second DD taxol yesterday. I have minimal SEs. I still have runny nose/eyes that has been going on since starting AC. Some fatigue, but not bad. New with taxol is my nails looking weird. They have a funny bump across, fairly low down on the nails and some feel a little tender. But that is all! So perhaps taxol will be better for you. I had mouth sores early on with AC, but not with taxol. The BEST part is I am starting to taste food again. Yeah!

Hope everyone else is doing well, and having minimal or at least manageable SEs.

jenn3

Gill - thanks for the encouragement on Taxol - I so need it right now.  The AC has really hit me hard with various SE (some of which I haven't mentioned because they're disgusting) and the fatigue has been very hard to deal with. 

How's it going with the boot?

unklezwifeonty

Dear Jenn,

Glad to be of help. The cardiac issues are very very likely from Avastin and not AC. At the doses given, the risk of CHF from AC is 0.1%.

gillyone

The boot is just there. I have been spraying it down every night with Febreze as I was told when I first got it that "Febreze would be my best friend." However, last week, as I cheat and take it off every night - don't sleep in it - I noticed that it had washing instructions so threw it in the washer. I can't imagine why they didn't tell me this when I got it. I go and see the doctor about my foot on Friday next week and I'm hoping he'll  say the boot can come off, but really that is wishful thinking. It will only be 6 weeks, and I was told it could be as long as 3-4 months.

Jenn - hope you do well on Taxol. A close friend says I seem to have more energy now.

buccaneersdj

Ugh! I hate chemo day!

Karen09

Good luck Donna! 

 Is anyone else doing Taxotere??  I have one last treatment of FEC next Friday and then I start 4 of taxotere.  I've read some people find it easier, some don't.  Guess I'll have to wait and see. 

yasminv1

HI Ladies, 

I hope all of you are well. Today is Day 7 after TX#3  and I am feeling better than last week but still don't feel like myself yet. My stomach and mouth issues continue but they are better than earlier this week. It seems for me each treatment gets worse and worse and I take longer to recover. Anyone else experiencing this? God bless all of you who have to endure more treatments than I do. I only have one more left. Mom had to visit Urgent Care this afternoon. Poor thing has sinusitis. She has to wear a mask for a few days around me because although the sinusitis is not contagious the cold she has with it is contagious. She says she feels so terrible to have gotten sick when it is so critical for me to avoid sick people. She is at home disinfecting everything with gloves and a mask. I think I am just going to wear a mask myself so she doesn't have to...can't imagine how uncomfortable wearing a mask is when you are having issues breathing. Poor thing!

Hugs to all of you. I hope all of you have had a great week.

Jenn3: Hooray for the Procrit! I am glad the insurance is covering it. I sure pray this makes things a ton better for you.

Karen09: I am on Taxotere & Cytoxan. I unfortunately cannot compare to what you have had and I am sure everyone has different SEs but I can tell you what my SE's have been. I have had the following each treatment and My Onc has attributed all to the Taxotere:

-Diarrhea and stomach cramps that last 10-16 days after treatment.

-Acne like rash on head, face and upper body.

-Darkening of nails and soreness

-Mild joint pain in the knees and hands

-Stomatitis which is inflammation of the mucous lining of any of the structures in the mouth, which may involve the cheeks, gums, tongue, lips, throat, and roof or floor of the mouth. First treatment I woke up with a swollen bottom lip. Second and Third treatments my cheecks, gums, throat and Tongue were swollen.

-No "Mouth sores" but have had a Sore throat and tongue and food has no taste.

Gill - You hang in there with that boot. I know you must be ready to be done with it. I had bunion surgery on my left foot this past Feb. and had the boot on for 6 weeks. I could barely take it. You sound like a trooper. Have you been doing physical therapy yet? I cringe thinking of it. The worst part for me was when they would put a solid block of ice without anything covering the skin on my foot for 20 minutes...it HURT LIKE HECK! Take Care!

Kim09

Well I just had my last TC treatment today and wouldn't you know the blood work seems to be indicating an iron deficiency could be starting as my RDW is high and my Hematocrit is low.  I have an appointment with Onc next Thursday and I well be discussing this with him.  

Karon09 - I think I was one of the lucky ones had very few side effects.  I had to give up Orange Juice because it seemed to be what was causing major cramps. 

Does anyone know how long before a port comes out after the treatments are finished?

gillyone

Kim - I asked the onco nurse about port removal at my last tx. She said it depends on what your doctor thinks AND he will consider the chance of recurrence and perhaps leave it in for a while. Not really what we want to hear!

Lilah

Thanks everyone for the warm welcome! 

Well, I had my first Taxol/Herceptin on Monday and that was followed by two-and-a-half days of diarrhea (stopped this afternoon, thank goodness) and on Wednesday I woke up feeling like I had been hit by a mack truck and dragged for miles.  Ugh.  I must say I was lucky with the A/C, hardly any SEs... but my entire body is aching and I can't even tell if it's muscles or bones.  Yesterday it was definitely worse: I literally ached from head to toe.  Today, I mostly ached only when the Tylenol wore off (shooting pains in my calves, lower arms, and right breast -- the site of the cancer), although tonight it seems worse (though that is probably due to running around all day).  Tomorrow I will call my doctor and see what she can give me for the pain.  Wednesday I also was incredibly exhausted and slept on and off all day but today I was able to go to work (I am fortunate in that I work at home except on Thursdays, when I teach all day at a university about an hour's drive from my home).  Managed to teach and remember everything I wanted to say    Managed to drive home before collapsing.  A good day, all in all, but right now I'm just wishing for a fairy godmother (or maybe just an incredible masseusse) to come rub my aching body. 

Someone mentioned Alleve - I will ask my doctor if I can take it.  She is very particular about me not taking anything without her knowledge.

Someone mentioned hating chemo day: I always eat donuts!  I figure what the hell, indulge once every two weeks, you know?  Bring a treat that you love.  It doesn't make the reality different but it is nice to indulge. 

Best thing about chemo: I've lost 10 pounds!  Woo-hoo!  Best diet I ever tried.  Okay maybe the best thing is killing the cancer in my body... but ATM I'm just thrilled to at least be looking better (aside from the hair loss, but hey: the wig is GORGEOUS! and my clothes never looked better).

Here's hoping tomorrow is easier... not just for me but all of us who are suffering.  I am counting down the days.  I've got 3 more Taxol's to go (Herceptin for a year but I am told there are no side effects with Herceptin).  I have to check the papers because I don't remember how many pluses I have for the HER2-Neu... also have no idea how to create a sig that says all that info you all have under your names.  If some kind soul wants to PM me with instructions I would be grateful (or even a tip as to what to click on first and where to find it).

Cheers,

Lilah

unklezwifeonty

Dear Gillyone,

The doctor has as much clue about your chances of recurrence as the tarrot card reader. Really.

Once you are done with the treatment and MUGA, PET CT, Bloodwork etc. for which the port is useful, whether you have it taken out or keep it in is a personal decision. If you decide to keep it in, it needs to be used or flushed every 4 weeks or so.

buccaneersdj

Karen09- thanks for the luck!

Lilah- yesturday at chemo I feasted on Strawberry pull apart Twizzlers and Pink M&Ms, and still had the nerve to ask my onc, "why am I gaining so much weight?" lol

Chemo day was uneventfull going in today for Neulasta, IVF, Amoxi can hardley wait! Then it will be another 7-9 days till normal comes back.

Anyway, I wanted to say to everyone TGIF!!!!! May everyone have a needle and Doctor free weekend!

((((Hugs))))) Donna

NavyMom

Thanks for the LOL moment Buccaneer.  I really needed a chuckle and your comment about the candy and weight gain had me laughing.  I, too, am on the TAC routine and had TX #3 3 days ago.  I am struggling terribly this time around.  And I, too, continue to gain weight.  Very frustrating for me since before chemo I was at the gym at least 4 days a week with lots of physical activities in between.  But whatever.right?  Just need to beat this Cancer.  TGIF to everyone. 

Navy

jenn3

Today is my first of 12 weekly Taxol treatments and I am nervous.  But.................. I guess if made it through AC I can get through this.  The fear of the unknown is back! 

Lilah

Good luck Jenn!  I know how you feel.  I just started Taxol myself on Monday.  Hopefully, since you're having it weekly, you're having less at once (I am getting DD Taxol once every two weeks)..,. and less at a time maybe means less SEs?  Anyway I wish you good luck and hope for minimal side effects.

And thanks to Kim who directed me to the place where you can put your cancer info... I don't remember all the details but I put in what I could   Will dig up the papers later and add more when I can.

Cheers,

Lilah

Lilah

Good luck Jenn!  I know how you feel.  I just started Taxol myself on Monday.  Hopefully, since you're having it weekly, you're having less at once (I am getting DD Taxol once every two weeks)..,. and less at a time maybe means less SEs?  Anyway I wish you good luck and hope for minimal side effects.

And thanks to Kim who directed me to the place where you can put your cancer info... I don't remember all the details but I put in what I could   Will dig up the papers later and add more when I can.

Cheers,

Lilah

Lilah

Good luck Jenn!  I know how you feel.  I just started Taxol myself on Monday.  Hopefully, since you're having it weekly, you're having less at once (I am getting DD Taxol once every two weeks)..,. and less at a time maybe means less SEs?  Anyway I wish you good luck and hope for minimal side effects.

And thanks to Kim who directed me to the place where you can put your cancer info... I don't remember all the details but I put in what I could   Will dig up the papers later and add more when I can.

Cheers,

Lilah

jenn3

Just getting back from my first Taxol treatment - very tired.  They gave me  drugs that make me sleepy with this treatment. Ativan because I was nervous followed by Benadryl to ward of SE's along with steroids, nausea meds and Tagament.  One 25mg Benadryl usually knocks me out, they gave me 50 mg plus Ativan - I am in la la land................  However, all went well, nothing bad happened (so far).  I did run into several people that I had been in cancer classes in, we all grouped together, talked and made the time go by much quicker.

Lilah - Thanks - I am hoping for less SE's with weekly treatments.

Have a good weekend - and I have to get started early - GEAUX SAINTS!!!!!

weety

Hi all,

I just posted on the TCH thread, but realized this might be a better place to get my answers.  My bloodwork was too low to get chemo #3 today.  (WBC-2.7 RBC-10.9)  NOw I have to do both the neupogen and the procrit shots this weekend.  I had the neupogen shots twice before, but never had the procrit.  What can I expect from this?  Has anyone ever had both types of shots on the same day?  My onc just told me to take Tylenol if I have bone pain (I didn't have any with just the neupogen on its own last time)  Also, at what levels did any of you have to do the neupogen or procrit?  I'm thinking my onc is WAY on the conservative side???  She wants me to continue the procrit once a week until I'm back up in the mid 11's.

weety

I almost forgot to ask about nausea.  Does anyone take ginger for it?  My onc said the meds we take are really more anti-vomiting rather than anti-nausea.  She suggested I try the ginger.  Has anyone had success with it?  Do you use pills, ginger ale, tea or what?