Cytoxan Taxotere Chemo Ladies- February/March 2013

Headeast

KGF, what an adorable baby! 

SC, yayayayayayay! Hooray!

FDM, awesome costumes!

Headeast

wrenn, is it rash? Do you see if it is where the pores are! I had that and  head&Shoulders helped a lot!

audra67

momat- I felt your pain about crying in store....and my husband is getting over stressed being the 'caregiver' and he went outside today and did some woodworking things and said how much he needed to get out of the house and felt so much better...it is so hard on them too isn't it?  Makes me feel bad to be causing stress to my family...I am NOT a clingy person and usually he is much more 'needy' than I am and since this BC thing I am almost wanting him in the room with me all of the time....and I certainly haven't went out without him yet...he is like my rock...so that was HUGE to go by yourself to the store I think!

Welcome Toby- and good luck tomorrow, it's easier to get the infusion itself than you think...wishing you no side effects!

Bluegrass- I am SOO sorry, darn, I thought you were done!

FairyDogmother- you are darling!  LOVE the gang and the outfits!

and no I am NOT sleeping well AT ALL...was using Ativan to sleep but it lasts 6 hours and I wake up at 6 hours...every night or sooner...then cannot get back to sleep....I called MO today to ask for advice or something else to sleep and didn't get called back...going in for blood work tomorrow and will ask then...I need more than 6 hours per night..then I am exhausted all day but cannot sleep....it is so weird...I was the BEST sleeper before this...I think the hot flashes waking me up all through the night do not help...

Headeast

Momat, I am reading the thread from the end up. I sued Head&Shoulders Original. I don't remember who shared that information before. It helps a lot. Also, use some Peroxide, just clean the area with a damp cotton ball. The pores get dirty now that you don't have hair. Try to wash your scalp often.

momat927

oh thank you  for responses.  I guess i will live with rash unless gets out of hand.  Snowing here. Going back to veging. Love, momat927

Melrosemelrose

I had a few head bumps as my hair left.  Those may be clogged hair follicles.  I used some Neutrogena T Gel Shampoo which helped take care of those bumps and also had a prescription for a gel antibotic. 

KLI

A couple questions i used tape to hold gauze on over my port scar now have red patches where the tape was and it has been days. Anything to put on it or leave it alone? 

Also back of tongue has white patches but not otherwise bothersome is that thrush? If so what do you do for it? Thanks...

Headeast

kli, are you using Biotene mouthwash? It helps with the tongue issue.

SchoolCounselor

kli. he I had thrush, I used biotene and ate a lot of yogurt. It helped and I did not need a prescription.

TeamKim

Momat -- when my hair fell out, I had a lot of bumps, I think they were irritated hair follicles.  It used Cortisone cream on some itchy spots, and used a washcloth on my head for a little exfoliation.  MO nurse told me to be sure not to use any soap or shampoo with any perfumes in it (no baby shampoo, for example), and she suggested Aveeno products, particularly the ones with oatmeal.  I ended up using Aveeno Calming Cleanser on my head, which seemed to not irritate the bumps, and dove soap everywhere else.

SchoolCounselor

I use Aveeno, always have! So no bumps or irritated follicles. I do shampoo and condition everyday and put argan oil or shea butter on my head.

momat927

thank you everyone.  Great advice & suggestions.  Momat927

QuirkyGirl

BlueGrass - pain could be from being in the same position. I slept in mt recliner for three months due to healing issues and developed shoulder pain that immediately disappeared when I moved back to my bed. I'd try mixing things up.

Melrosemelrose

KLI- If you have had some irritation from the tape, make sure you have removed all of the adhesive off of your skin.  It may take a little while for the skin to recover after being irritated from the tape.  You may want to try using paper tape the next time.  You may also want to have your onco look at it that port scar to make sure there isn't infection and to find out if there is something you can put on the area to help it heal.

If you think you have thrush, you may need to get some Nystatin to help get rid of it.  Call your onco tomorrow if you can so you can talk to your onco about your symptoms.  You want to knock out that thrush before it gets worse.

MinusTwo

Momat: My dermatologist said to spread a light coat of original
Head&Shoulders and leave it on for up to 5 minutes before adding water & washing it
off. Works like a charm for me.

KLI: Paper tape is a good thing to try but if your skin is really
sensitive, even that will cause problems. i can only use Hypafix or
Medipore. They have it at the hospitals but I have to take my own to the
infusion center. There's a good thread here about Adhesive tape problems.

http://community.breastcancer.org/forum/91/topic/767669?page=11#idx_323

Bluegrassharp

QuirkyGirl, I know you are right that being in one position is not good for muscle/joint aches. I move from bed to kitchen chair to recliner to computer chair to bed to recliner to bed, etc. After chemo started in late October, I just can't be in one position for very long day or night before something hurts, especially in the first week. Walking and working out at the gym helps, but sometimes (too often!) I'm too beat for that.

But now I think my right shoulder "rotator cuff" (?) problem got started right after my lumpectomy in late September, before I got my new recliner and could only sleep comfortably in bed on my right side. By the time I realized my right shoulder wasn't right, I'd started chemo and that has just made everything worse.

I am heartened that your issues resolved themselves, and hope mine will go away after chemo stops aggravating the situation. In the meantime, I'm seeing a physical therapist on Monday, and hope she can give me some exercises that might help. I'd like to think I could DO something about the shoulder pain -- which keeps me up at night and tired in the daytime -- instead of just waiting around for chemo to end. (Patience is not one of my virtues!)

wrenn

I feel bad for having something as silly as a head rash when you guys are suffering but I sure appreciate all the tips. I am going to use the head and shoulders and will wash my head a couple of times a day. I do it in the morning but have never thought of doing it again later but that makes sense. Will try the peroxide too.

I can't wait for all of you to be done with this stuff and get back to our new normal. You are all so brave.

xoxo

MinusTwo

Wrenn:  NEVER feel silly.  I would have floundered w/o all the tips & tricks & support from BCO.  All of us suffer from different things at different times but we sure can empathize & hold everyone in our thoughts!!

momat927

Wrenn, there seems to be such a shifting array of SE's that one minute it might be a rash and the next bone pain. It seems like we are dealing with something that is like mercury and hard to pin down. It feels good to get control over even one problem!!!!!  

Right now, like others of you-sisters- I had to move out of bed and wish i had a lounge chair but landed on the couch.   Probably Neulasta making itself known like the Hulk stretching bone marrow.  

I would be in trouble without all of you & on nights like this I am grateful to post & not feel alone.  Nothing is silly.  Love, momat 

wrenn

i don't think i could have got through any of it without my group therapy girls.  This has been the greatest support i have ever had and i have 4 sisters and many great people around me but here is where I feel at home. To see such compassion from women at their very worst is mind boggling. You all deserve the best after this nightmare ends. 

SchoolCounselor

I love that we support ourselves with everything. Some times I start to talk my my DH who is wonderful but just doesnot always   get it. I'm learning that people who have not been there can't. Everything is important and all SE matter, we are trying to get back to the new normal. Which will be a challenge for all of us in different ways. 

Today I get neulasta and I am not looking forward to it at all. Loading up on Claritin and since my picc line is out, Yeah, I can get in the whirlpool tub. 

Next I have to notify my job that I am not returning February 2 as I said , but march/April. After exchange and Livestrong and Pysiatrist because I can't walk now. Also getting my PET scan next week. This is my new normal for now. 

Today is a snowy day, great day to hang in with family, make chicken soup and do crafts!

Hope we are all hanging in!!

keepthefaith

kli, my Mo recommended probiotics for thrush this time, but ended up getting a RX bc they weren't helping. I would let your MO know before the week-end.

Stay warm and safe this week-end, ladies!

QuirkyGirl

I couldn't agree more, Wrenn.  You all are my lifeline.

There is a certain grace and peace in a embracing the new normal.  Freedom, too. SC - I'm not walking today either.  My day to watch Bones with my kids, get more henna tattoos from DD and simply roll with the reality of the day.  So much better and healthier that way.  

audra67

OK question for you all-

What is the difference in having one treatment vs. 2 or 3 or 4 or 6????  Has anyones MO said why the 4 or 6???  And Wrenn- did yours say what your benefit was from having one treatment of TC??

I am actually considering NOT doing number 4...I probably will, but just wondering why each one and supposedly the magical number of how many treatments is magical..???

KBeee

KTF, Congratulations!!! What a cutie!

SC, Yahooooooooooooooooo!!!!!!  I am so happy you are done in the chair!  I hope your side effects ease quickly and completely.  the nice thing about the last round is that once they are gone, they stay gone!

FDM, You rock!  I love the outfits!  Wish you could head through the children's cancer wing on your way to each chemo!

Audra, they determine the best number of rounds typically during early phase clinical trials.  that being said, I know that 4 vs 6 has not been studied for TC, like it has for AC.  For each round, the MO has to decide risk vs. benefit.  That is why mine stopped at 4, rather than going to 6 for me.  My oncotype was so low, and with no positive nodes, and a small highly Er+ tumor, he clearly did not think there would be any benefit to the additional 2, but there would be a lot of additional risk.  

Had i done my original 6, I would be sitting in the BGC right now, for the last time.  I am thankful that instead, I am washing my uniform for work because i work the overnight shift tonight.  if you had asked me 6 weeks ago if I would have had enough strength, I would have said no way...it does come back.  Still not 100%, but on its way.  I am taking a selfie each week to record hair growth progress.  About 1/4 inch so far.

Hoping for minimal side effects for all who've been in the chair this week.

TeamKim

Audra -- I had only a half treatment for tx 4 (had the C but not the T) because I had a pretty severe allergic reaction to the T that was getting worse with each treatment.  MO said the only reason they do 4 is because originally, they did four.  So someone has to do research about the comparative effectiveness of three tx, and in the US it is hard to do that research because people don't want to take the chance that they don't get enough.  It is possible, he said, that a country with socialized medicine will undertake the study with older patients (some health insurance systems go with less adjuvant treatment for older patients) and 5 years from now we may know that 3 treatments, or 2 treatments work just as well.  Right now we don't have the evidence to depart from the normal regimen.  That said, in my case it would have been dangerous to give me more Taxotere, and seemed risky to substitute another drug when we don't know how I would react.  So risks outweighed the potential benefit IMO, and my MO said he was comfortable with that.  Hope that helps your thought process -- it is a hard decision, but you have to do what is right for you.

keepthefaith

audra, I have pondered the same thing. I have tolerated both TX's well so far, but of course, none of us want to have more than necessary. My MO told me, that in my case, if I decided that I didn't want all of them, she would not have a problem with it. I guess bc of my DX, onco score, etc.

FairyDogMother

Hello All my Warrior Ladies!  

I was told my treatment schedule at first it was 4 days a week for 4 months then I got switch for 4 treatment every 3 weeks based on test scores.  

Make sure you put conditioner on your scalp it helps and leave it in for 10-30 seconds.  Some lades have told me Head and Shoulders works.

As for the lack of sleep I use children's liquid Benadryl.  Since I"m allergic to most other sleeping aids. Also, get a wedge pillow if you don't have a recliner. For the leg pain, joint pain I found putting pillow between my knees helps. 

For the mouth issues Biotene is great and baking soda and salt water rinse too. I found getting a water pick helped out as well.  

SchoolCounselor- I found Claritin to work better for the shot then claritin.  Also for the peripheral neuropathy, the B6 300 mg seems to help me. I couldn't walk or hold things on my left side until I went rogue and took it.  There are tons of research articles saying it helps with chemo patients. University of Chicago has some good data on it.  It is water soluble so you will flush it out. 

Wrenn- vent we are here to listen and give advice.  For the rashes I just try to use a cream aquafor I think works well.  

I do themes on chemo, because the only thing I can control is where I wear and my attitude.  Trust me Chemo is no easy joy for me so many issues.  The allergic reactions, mouth sores, thrust, the peripheral neuropathy, bloody nose, ears, and stools, heartburn from hell, lack of sleep. and not being able to breathe. I get up everyday and force myself to do 15- 30 minutes of exercise. If I can't walk I get on a bike.  Something to get me going. I find inspiration in others. I see Chemo as a battle and I won't want it to win.  I call it my dark months. I have seen the damage it did to the women in my family.  I'm stubborn when it comes to letting it take me down.  There are days I can't get out of bed and get up and do the 15 minutes at least. 

 As for the costumes Amazon.  My last chemo I want to do something fun.  I would love to do the Sound of Music, but I would have to make them.  The secretary ladies at the infusion center mention Marilyn Monroe and JFK.  Since the last treatment will be hubby and me.  The Wizard of Oz people will dress up to visit some kids in chemo.  Someone on Facebook PM us asking if we would come and we are going to schedule it.  As for my other appointments I wear goofy hats.  We must find some smiles in the world of cancer.  I think I got this from my mother when she went through cancer at 33 when I was 6 years old. She always wore something funny.  I think she did it for me, but she is dead now I can't ask her why. 

I think I will need to change MO at the end of chemo. This is what happen today:

just got back from the Otolaryngology (throat doctor), turns out I'm having allergic reactions to chemo. The doctor was very nice and mention that my MO (medical oncologist) should have realized that information given the chemo I'm taking meaning Taxotere. I told him she did not believe me, hence why she made me come to him now. Otolaryngology along with his other doctor and PA both said I'm her outlier and patients on this chemo do have allergic reactions and she should have believed her patient. Every patient has different issues with chemo. He told me I should have been getting steroid before, during, and after each chemo and Benadryl with each chemo. I told him yesterday was the first time the nurse stop my chemo and gave me Benadryl. He also mention of me taking an Epinephrine injection. Great more needles. So my last chemo, I will see him immediately after chemo to make sure we aren't doing permeant damage to my throat. Then I will meet with him 4 weeks after that chemo. I thank God for the nurse who gave me Benadryl because if she hadn't done that I might have been at the ER with a track tube so I could breathe. The otolaryngology said, that saved me from further damage. Today I have a fever and sore throat, which hurts to talk or swallow, but my breathing is better. Other side note: yesterday during chemo I meet a patient who had my MO and she dump her for the same reasons, would not listen to her about her side effects and told her she was have other side effects. I think after my last round of chemo I will be changing medical oncologist. You got to love the unknowns with each cancer treatment. On a positive note I feel like I won a small victory in my treatment plan.

Keep on fighting warriors. Vent when needed, go outside and scream, and laugh and hug each day.  

TeamKim

Awwww, FDM -- I hope you do find another MO -- you are an important partner in your treatment, and your MO should ABSOLUTELY be listening to you!

I had allergic reaction to Taxotere as well.  My MO did listen (especially after I made a photo album of my rash/hives).  Each infusion the reaction got worse.  I can't imagine that rash being on the inside of your throat (basically) -- it must be so painful!  Benedryl helped me too, though I didn't get it in the IV, just took the pills every 4 hours.  Also I got a prescription for steroids from my MO during the time I had the hives.  MO told me that I could potentially stop breathing if I had Taxotere again, so he didn't give it to me in the last treatment.  Abraxane is another taxere which does not use the same suspension (which is actually what most people are allergic to in Taxotere and Taxol), but instead uses a human derived blood fat solution.  It is very expensive, so some insurance won't approve it (and some MO's won't use it) but might be worth pursuing -- for what it is worth.  My MO requested it for me and it was approved by my insurance, but in the end we decided just to do the Cytoxan only for the last tx.  

Good luck -- I hope you find relief from the pain!  (I like the Marilyn & JFK idea -- Lucy & Ricky would be fun too -- or Fred & Wilma Flintstone -- lol!!!)

MinusTwo

Fairy-Dog:  I had a prescription for steroids (Decadron) to take 2 the day before chemo, 2 the day of chemo & two the day after chemo.  Worked like a charm - although it sure made me hyper awake.  I only had Benedryl the first infusion.  I agree, you need a new MO if yours isn't listening.  Good luck.