Chemo June 2010

Just used your tip about a lint roller on the hair stubble...that's genius!  Thanks.

Had ac #3 today.  Starting to feel some nausea, but I'll take zofran and decadron on about an hour.  Took Ativan before I went, as usual, because my nausea starts before I even get there!  And I remembered my emla cream this time--harly felt the poke.  My port was clogged again, so they gave it their "draino" stuff and it cleared it up.  Protein builds up and makes a "flap" in there.  The flush could get in, but blood wasn't getting out.

I asked my onc all my questions about low blood pressure, low wbc counts, fevers, etc., and basically, I survived so I'm good to go for the next round!  All my counts were back up thanks to the Neulasta!  I found out that Neulasta doesn't keep the counts from dropping, it just shortens the time that they are low.  We need to be very careful with handwashing, etc, but don't need to wear masks or seclude ourselves (unless that makes you feel more comfortable!).  My Neutrophils were so low that they showed up on the computer as 0!  But as long as they come back up, I guess that's acceptable.  The low bp/light-headedness could have been from lack of fluids, chemo se, getting sick, etc.  If I have another bad episode I need to call my onc.  And, of course, watch the temps.

So, we'll see how this round goes!  I will try to drink more fluids next weekend--i know I drink a few glasses a day, but probably not as much as I need to.

Hope everyone's elses se's are minimal!!!

Tina

Latte ~ Taking care of a two year old IS a full-time job!!!  It's hard enough when you feel good, but it's expected that you get frustrated at times.  The one thing constant about little ones is that you they love you unconditionally and you are most likely beating yourself up about something your toddler has already forgotten about!!!  Hang in there!

Kittycat ~ The little one in the picture is my 2 year old grandson...I almost didn't put this photo on because my face is so puffy from the Decadron, but I loved that he had to have a sleep cap on like his "mom mom" as he calls me.  We involved him in the whole process of my hair falling out and leading to the buzzing what was left.  No 'biggie' to him.  If you ask him where my hair went, he says, "in the vacuum cleaner" very matter of fact....gotta love those little ones.

 R711 ~ Even though my posts are kind of "blue"this week, I have actually tolerated the weekly Taxol/Herceptin infusions quite well.  So don't let my being kind of negative right now scare you.  The biggest problem for me is the fatigue, and I think that's why I've been a little crabby, I'm just soooo tired.  I have a few GI symptoms, the worst part is the chemo diarrhea, but my appetite is pretty good for the most part.

Cheyanne ~ I think an antidepressent is a good idea.  I take a low dose, and it helps me cope with all that we are going through....and we are ALL going through A LOT!!!!

TMarina ~ I really pushed it too hard with work these past few days, and I am not going to do that anymore.  I was soooo sick when I finally made it home last night, I think the worse that I have felt since I started this June 7th.  My oncologist filled out paperwork for intermittent FMLA while I'm undergoing chemo...if I need another note each week to only pull two 12 hour shifts rather than 3 or 4, then I will do that...I think my job is safe for up to 3 months.

I cried for the first time during my 6th round of chemo today.  I had an agency nurse, who was nice, but I didn't know her & I was used to my "Team" of Oncology nurses, so that made me uncomfortable.  Plus, I asked her if they were going to do a PT/INR because they increased my dose of Coumadin last week, she didn't even check and said "no" I didn't need it (I had a blood clot from my port, hence the blood thinners).  I really didn't feel well, and when I asked her to get me a prescription for something stronger than immodium for my liquid stools (which the NP told me to ask if I needed it), the nurse told me I didn't need it and to keep trying the immodium!!!  I am dehydrated, my BP was only 82/60.  "HELLO"  assessment skills???  I also lost 5 pounds this past week, this is not normal for me!!!  I know my usual nurses would have at least checked with the MD or NP to double check what labs I might need, or see if they want to give me a prescription.  I was so upset!!!  Then my ex called and asked if I was feeling better today (I was a little bit better) but that made me cry even more.  I was told to ask the nurses to check to see if they would give me fluids, and this nurse kind of ignored that....so, when my infusions were complete, I asked her to run in the rest of the flush bag (at least), which she did.  I felt soooo out of control!!!  Then went to the free head covering shop at the Cancer Center, and the volunteer just stayed in there with my daughter and I.....acting like she was worried that we would take too much stuff!!!  (2 scarves, 1 turban).  Talk about uncomfortable.  When I've gone in there before, they just say take whatever you need, that's what it's for.  Plus, I have donated extra wigs that were given to me, about 30 turbans, and a few other items that were given to me that I can't use.  Arrrrgggghhhhhh.  

OK, now that I've been a negative Nelly, we did end the day on a good note with my daughter and I enjoying a nice lunch together (her 23rd birthday was yesterday) and did a little shopping where I bought a couple of scarves and 3 hats.....getting addicted to the hats!!!  OK, that's enough rambling for today....just need to get out of this slump!!!!

God Bless you all!!!  You are all amazing women!!!  Wish I had some of that strength....Hoping for an awesome week for everyone with minimal SE's.  

Had a rough time with my 2nd TC today, never got the C, have to go back in the am for it.  Here's what happened, I got my pre-meds, then they started to push the Taxotere at normal speed and after a few minutes I felt flushed in my face, they stopped the drip, gave me benadryl, started it back at half speed, then they tried to up it to full speed again, and my throat started to feel dry and sore and maybe swollen.  So they stopped it again, and waited 15 min.  The sore throat didn't really subside, so more benadryl, another wait, then start it up at 1/2 speed.  By the time the T was in me it was 4:30, and since they expected to have to run the C slowly too (i mentioned a slight sore throat during it last time, when it was given a half speed) they said 'come back tomorrow'.  Now the Onc told me the C is what keeps the T in your body and gets it to bind to cells, so now I'm afraid I had this incredibly expensive treatment today that isn't going to be effective with a 20 hour delay until the C.  Plus i'm worried that if I'm showing an allergic reaction to the drugs then maybe I should be on something else?  If this gets worse than today I don't think I can do 2 more.

Julia

Julia 

Julia2, your reaction sounds very similar to mine on the 2nd round of TC. But, my onc would not start the T up again once I reacted. They shut it down and gave me steroids. My reaction stopped very quickly. She would not allow me to continue on TC. She gave me the options of AC and CMF. Since I am HER2-, I opted for CMF. PM me if you have questions.

I am trying to get myself geared up for round three of TCH.  I have to have the Taxol super slow due to the feeling of shortness of breath.  I am dreading going back.  I am just starting to feel a little better.  The second time was so difficult- the fatigue, constipation, then an internal stitch from my port popped out.  Ugh.  Also I met my rad MD for after surgery- and the thought of radiation for 6 weeks.  I know I have to do all this- its just depressing sometimes.  Blah , blah, blah.  I will get through it, just SUCKS!   

RS711-  I think "chemo acne" is a common SE, lots of ladies seem to have outbreaks.  I know several ladies like products from lindiskincare.com.  They were developed just for chemo patients.  As I  am very sensitive and have roseacea outbreaks, I haveplayed with aromatherapy essential oils for years.  Essential oil of lavender and chamomile are very soothing and healing.  Do NOT use them undiluted.  I switched to Cetaphil cleanser and Cetaphil moisturizer (most drugstores).  It is designed for sensitive skin, no fragrance etc...  After cleansing, I put a squirt of moisturizer in my palm, then I add 1-2 drops of lavender oil, mix it up and rub it in.  Depending on my skin, I use different essential oils.  Lavender helps breakouts.  Chamomile helps sensitivity.  Rose helps dryness.  As our skin is probably very confused and challenged right now, I think the less we do to it, the better, try to baby it. 

I am so sorry so many of you are having difficulties with your chemos.  Some day we will all look back and be proud we were brave enough to go through this torturous treatment.  We can do this!  Remember Jayne's advice (which I LOVE).  "You don't have to be brave.  You just have to show up".

I feel so selfish when I read about everyone's battles with different SE's on here.  Mine is no better or worse than anyone else's.  I'm so sorry, you guys, that this battle for life takes such a toll on our bodies.  But in the midst of the negative and horribleness of this disease, there is a bright spot - and that's this forum.  Since I've discovered this place, it has put the joy back in my heart even on my worst days.  I love reading and getting to know you precious people.  I pray for all of us that our battle won't crush our spirits and that our families will also survive.  AND I'm finally having a good day - I am hungry, I am eating and I am drinking!  But tomorrow is treatment #2 and back to the yuckies!  Until then, I shall pretend that I'm a normal person (except when I put on my wig later and go to Walmart with my daughter)!

I just want to say how special you all are!  Like Sherry (hooray, savor your feel-good day), knowing and talking with all of you has brought me such hope and optimism.  I believe in that old saying "that which does not break us, makes us stronger".  Can you imagine what we will all be able to do with our amazing strength when we get to the other side of this battle??  I am fantasizing a post treatment reunion somewhere so we could all finally meet face-to-face.  How fun would that be???  As always, you are all in my prayers (and praises too).

Bon -thanks for chiming in about the Gaila.org headwraps.  Not only are they a wonderful organization, their scarves are beautifully made.  They are soft, no inside seams, very well thought out.  Not to mention, you can look like a regal African queen!  Why not?  I can pull that off!  I live in NYC!

tmarina- I agree with you about expensive skincare products.  It has been long known that most of the price is mark-up, not ingredients.  Like I said, the Cetaphil products are great "neutral" cleansers and moisturizers.  The essential oils run about $8-9 a bottle at the health food store.  These tiny bottles last probably 6-8 months as I only use a couple drops at a time.  You need to make sure they are "pure essential oil".  Sometimes, they cheat by mixing a bit of lavender with cheaper oil.  As I said, I have studied a bit about aromatherapy (it is widely used medically in Britain).  In Britain, they even use lavender on some burn patients as it works so well in healing.  I often use about 10 drops of lavender in a running bath.  It is well-documented that lavender is relaxing.  We could all use a little of that and it makes the whole house smell great.  I've been known to toss some in my stressed DH bath.  He refers to it as my "hoodoo voodoo" stuff!

Thanks for the tip on lavender... I have an organic health food store nearby and I will look for that! Last time I was there, the woman in the store helped me find the aloe for my scalp....

Chey- I have AC #4 on thursday and I can tell you that the fatigue seems to be cumulative. My dr. says it will let up on Taxol.

Yep, Cheyenna, I just had my 3rd yesterday, and never had any days with much energy, unfortunately.  The last 2 were better, and of course I felt great the day of tx!  Just can't wait to be done with this crap!

I went in for my Nuelasta shot and had a different nurse.  She asked all about my se's and was astonished as they all are when they hear about my non-existent neutrophils, and how my counts went back up and such.  When I told her about the light-headedness, she said to really push the liquids (same as my onc and his "fellow" told me yesterday).  She said if I do get that feeling again to come in and get a bag of fluids.  She said everyone seems to feel better after getting a bag.  So we'll see what happens-----I can tell you I am to the point of gagging when drinking water, and not much else tastes good either.  Stupid cytoxan....

T

Yes, ladies "you're not in Kansas anymore".  You are in the real chemo misery.  I am so very sorry for all your SE.  You know why you are doing this.  It won't last forever.  Thank God!  You are my heroes.

julia2-->yay for peeing!! lol!  Keep drinking!

Rachel1-->  Good to hear from you!  Did the headache start with the Cytoxan?  Because that is known to cause headaches and they can slow it down to prevent them.  Sorry to hear you are feeling so bad!  The jaw clenching could be the steroids.  Keep taking your nausea meds!  And if they aren't working call and get something else!  I get Zofran and decadron (steroid) in infusion, then take them for 3 days.  I also get Emend, and have compazine and ativan for back-ups.  I think there are even more different ones out there too.

I had my 3rd ac yesterday, and feel a little nausea, and alittle tired, but have been able to go for a walk and do some light house-keeping, etc.  I expect each day to get worse until about next Sunday or Monday. 

Hope you don't get hit too hard this round!  Keep us posted! 

Tina

Got hiccups now too!  I get them every round--same time!!

hi everyone

thanks for making me feel better about shouting at my daughter - I know everything you said is true, but it's still good to hear it from others. 

I'm feeling pretty OK now, and gearing up for my last AC in 5 days - I can't believe it is the last one!!! and then 12xTaxol, but my oncologist said it's like a walk in the park compared to AC.

i also got a headwrap from Gailafund.org. It's actually a nice story - my Mum died of cancer 8 yrs ago, and her name was Gaila. It's such an unusual name, and unusual spelling, that when I heard about theorganization it seemed like it was meant to be -I explained the connection for me, and asked whether they would send me one overseas and they did! I'm still waiting for my folliculitis to clear up (it's much better already) and then I can try wearing it.

 janny - my 2yr old's reactionto my hairloss was similar to your grandson's - i was really worried about how she would take it - but she just said "mummy black hair all gone" and when I asked her where it went, she said "floor" which was so true! now when she sees old photos of me, she starts laughing about my hair, and she thinks it is a huge joke :-)

hang in there everyone - as a friend said to me - Just remember that you are doing this for a reason and it's working!