November 2009-Starting Chemo

Hey Warriors, I wanted to update I have no side effects yet. Please don't be mad, I promise I have a more difficult path in the near future. My next treatment is Monday the 30th, which is #3 and according to my paper work, I have 7 more ( total 10) and then a scan to see if its working. If it is, we'll keep using that regimen. My treatments will be on Mondays until the holidays are over. To those of you having bad side effects, complain, complain, complain... squeaky wheel gets the grease. I hope you feel better soon. Happy Thanksgiving.

Anamary

I posted this on the Taxotere, Carboplatin & Herceptin thread, I apologize for the duplication, but am hoping to get some good advice from this group. I started TCH on 11/19 and am still feeling horrible. I am really discouraged, since my dr. had told me I "might have a couple of bad days", but that's all he anticipated. I'm usually really strong and don't let things get me down, but I have felt lousy since last Sunday. I can't stop the nausea unless I take phenegran, then, all I want to do is sleep. I've had diarrea for an entire week, but I'm afraid to take the Immodium, for fear of being constipated. My bones hurt, especially in my hips, knees and elbows. My tongue feels like it's been scorched and I have a terrible taste in my mouth. My bottom end is so sore from going to the bathroom so much, I can barely sit down. Please, if you have any suggestions to relieve any of these side effects, please share them with me. I want to be able to enjoy my family, especially now, during the holidays. I don't like who the chemo treatment is turning me into. Thank you for any help you can send my way.

Lisa

Hello November Warriors.  I hope you had a lovely Thanksgiving.   I have cooked for my family for the past 15 years and this year my stepdaughter and my son's girlfriend stepped up to the plate and helped me.  I prepared some dishes and the turkey but they took over when they got here and did all the actual cooking.  It was lovely to know that they cared enough to help. 

Today, Vogue Wigs is having a 25% off sale anything in their store.  I bought a "Forever Young" wig I liked, and it arrived in four days looking just like the photo  - so today I bought four more!  All four only cost me $100 and now I have six wigs to wear.  All different lengths and colors.    I will be living my hair fantasies out.  I will look horrible bald but I know some of you look beautiful that way.  I'm so Carly Fiorina it's not funny - skinny head, buck teeth and ears that stick out.   I admire her guts but I am not going there - wigs for me.    Those "Forever Young" wigs are cheap but to me, they look identical to the more expensive synthetic wigs.  What I did forget to buy was wig stands - I only have two.  I'll have to figure something out.

I also got some hats from Heavenly Hats.  It's a lovely thing they are doing but the hats I got aren't very nice.  Two were for children and unwearable for me, and one had a trucker type logo on it and was dirty.  The others were beret types that won't even cover my ears but maybe would look cute with a wig.   I don't think I'll wear any of them but I'll donate them to people who might care less than me.

I picked up my pre-chemo meds today.  They gave me extra steroids for some reason, but only 30 ativan and 30 compazine.  Hopefully I won't  need to use them like some of you gals have.

To those who are having bad SE's, my heart goes out to you.  I join you chemo warriors next week.  I started the December thread but will still pop in here now and then as I feel I know you all. 

Lisa (iammom2four),

I had my first TCH treatment the day before you and I am STILL sick too. Thought everything was starting to look good yesterday but not so. I did manage to do the food shopping this morning but by the time I got home I was feeling really bad.

 I now have prescriptions in place for next time hopefully they will help. My bottom end is really sore too, but luckily I didn't get the runs too bad - that was back to normal today at last. If I need to pee I just feel awful all over, no signal that I need to go at all. No hunger pains either so I eat what I like when it's meal time. I have a constant tension headache near my ears - not very strong but annoying and a sore throat the whole time. I've had really bad stomach aches/wind pain and really bad burping and generally feel really off.

 Sleeping is the only thing that helps.

It's been 10 days now, when will it end? At least the leg pains only lasted over last weekend but the time since that has been a blurr.

 Anyone got a suggestion of what to apply to the bottom end to relieve the soreness? I've been using vaseline so far but it doesn't really help much.

anamary 1 -thrilled this is not having a bad effect on you!!!
as for my fellow TCH sisters, I am with you - feel like HELL!  Adavin (sp?) helps as does resting but it is not easy.  I cannot imagine working thru this!!!  I am on disability and when I do feel okay I want my kids and family to see that.  I had my second tx on the 25th - got thru Thanksgiving okay and supposed to go to a wedding tonight - we'll see...I do have a beautiful wig and cute new boobs I would like to show of...

I second using baby wipes!!  I have daily diarrhea (so gross but it is what it is).  We can and will get thru this ladies - I am sure of it!!!

Take care all and remember this is not the time to play hero!!  When you need help - ask for it.

LVLinda- thanks for responding to my post. I recently came back from the UK- I now live in Singapore. I arrived with a bad cough, due to the cold , miserable weather in London -  and this was prior to my first bout of chemo. I am now 10 days into the cycle and the cough has persisted. My throat is dry and I have to strain to speak; like I've lost my voice. Could this be what your doctor calls 'Chemo cough'? Even though I had the injection to boost my white blood cells, my white blood cell count is currently low- from a peak of 9000+ to a low of 2000+. My oncologist reassures me that my white blood cell count will rise again, but do you think that this low blood cell count could be a contributory factor to my cough persisting in the manner that it is? I haven't had any side-effects to the injection, but having said that, when I wore my heels the other day, I did experience some lower back pain, pain which I don't normally experience when wearing such shoes!

Will check to see if they sell Thera Flu cough and cold here.

Take care. 

Linda ~ glad you are keeping busy with family before your next TX.  I so dread it... #3 for me.  I should be vertical by day 4.  That seems to be the way it goes.  I didn't rally with TX #2 till about day 9.  Hoping it is not that much worse this time as they tell me it is a cumulitive build up with each treatment.  YUCK !!!!  I hope everyone is enjoying the long weekend.  I had my hairdresser thin out a wig today and I put sunglasses on top of my head to pull back some hair and it looks really so much better.  I will have DD take a picture~

Have a good weekend all.

HUGS !

Alicia

Sore bottoms...... that happened to me last year and I found my cure.... BALNEOL, hygienic cleansing lotion for private part itching, soothing relief..... it worked wonders!!! Here at home, I got it at Walmart. I remember it was a bit overpriced, I can't remember how much, maybe $10-15 but the best money I ever spent. I hope it may help some of you.

iammom2four - I started Cytoxan and Toxotere on 11/20 and this morning am feeling "what's wrong with me this should not be effecting me so badly". I woke up crying this morning because of severe pain head to toe - my thumbs hurt, my eyes hurt, my mouth hurts and I feel terrible for complaining about it and want to be one of those "positive" people who don't let these things slow them down.

I heavily debated with myself about even posting today because I don't want to be a Debbie Downer but I really feel like I need to "talk" to someone about it.

My poor husband is at a loss for how to help and said to me today, "If you want to discontinue treatment, I will support you". That NOT what I want to do, but I don't know how I will be able to handle three more rounds (its a dose every three weeks) with 8 or more "bad days" each time.

I've heard it mentioned a few times that sometimes the dr. can adjust the chemo dosage, but event though I told my dr. yesterday about everything this week has brought, there has been no mention of adjusting dosage or frequency. Honestly I haven't been impressed with my care team - over the first few days of pain they actually questioned why I was feeling so much joint pain. My joint pain was so bad I couldn't walk and only full dose percocet around the clock (for 36 hours) even gave me slight releif. When I saw the dr. yesterday (PA actually) she said "Cindy its just that usually these treatments don't cause that much pain so I'm not sure why you experienced that". I feel like they are questioning my symptoms which is VERY unsettling and frustrating. She asked if I had history of joint trouble - I don't have any history and have never had pain like this in my life. I have an appointment with another cancer center on the 7th of December but I wonder if that is the right choice. I thought if I went and talked to my dr. and explained in person what I was going through that would make a difference in the approach - but now I don't feel it will. She only gave me the "I'm sorry, but don't know what to say" spiel.

I was told yesterday my WBC is "very" low but am not sure if that is why I'm feeling so many side effects or not.

I'm emotional. I hurt. I feel alone. I just don't know what to do about it. I am a generally positive person and this is killing me, making me feel emotionally "weak".

 Sending soothing thoughts for all the sore behinds. I have used a squirt bottle of warm water for no 1's and no 2's & pat dry with flushable wipes.  So far it's worked. Wouldn't one of those european bidets be useful at a time like this. I wonder why we don't have them in this country.  Maybe because they would use too much water?

Lowest WBC yesterday day10. Day 11 today and I am very tired but other SE's have gone, feeling almost normal.

Hugs to All!!

littlebird...don't worry about being a downer....if there's anywhere that you can let it all hang out, it's HERE!

Are you on any cholesterol meds or BP meds? If so, it almost sounds like maybe your chemo drugs are interacting with something else in your system to intensify the pains. One thing you could do is to log onto a drug-interaction-checker like the one in the pharmacy section of drugstore.com. Create a list of all your meds to see if any shouldn't be taken together, and to see how many list joint pain as a side effect. It is probably some kind of double-whammy effect that is hitting you. I'm so sorry, it sounds just AWFUL. You might ask about vicodin to see if that would work better for you than percocet. Not everyone gets relief from the same medications. At any rate, your doctors and nurses should not just be scratching their heads, they should be trying to help you. YOU TELL THEM YOU'RE NOT LEAVING THE OFFICE UNTIL THEY DO SOMETHING ABOUT YOUR PAIN! They cannot make any guarantees about cancer treatment...but THEY CAN DO SOMETHING ABOUT PAIN. This is the 21st century, any good doctor will tell you that ONE THING that they have made great strides in over the years is controlling pain! There is no way that you can go through another treatment like this, AND YOU DON'T HAVE TO. If your team cannot help you, tell them you're going to have to seek treatment elsewhere. Your husband, I'm sure , wants to help...he can try and find you a team that can help you through this with better pain control. Find a support group in your area that will guide him through the search, or search these boards for other members in your home state and ask their referrals.

YOU WILL NOT have to give up this treatment, it is your best chance. As bad as it sounds, you may have to resort to weekly treatments at a lower dosage if that is offered to you. It has been found in many trials to be just as effective so ask your oncologist.
Did they give you Ativan? If not, ask them why the hell NOT, and demand some. Several taxotere patients here on the board swear by it. And as for the brainiac who told you that usually they don't hear of pain like this on taxotere...tell her to google the words "Taxotere" and "excrutiating"...and then to get back to you in six months after she's read all the posts.

Keep us updated and if anyone here knows a good oncology team up in the Arlington, Washington area, please send littlebird a private message.

Hello, everyone.  Hope you all had a good Thanksgiving.

Littlebird, if you don't feel confident or cared for by your cancer team, get another opinion.  I am not on the same drugs as you, but I can read on this thread that several women are experiencing severe joint pain. Don't give up on the treatment.  You just may not have the right people handling your care. 

Anamary, please feel good for all of us!

Kayh, too bad bidets can't be prescribed for everyone undergoing this.

I am not bouncing back from this tx (#2).  I have the energy level of a 90 year old woman.  I try and walk everyday and not just spend all day on the couch, but it's hard.  Also, my throat is so sore that I really only can eat soup and soft foods.  Lots of popcycles.   

Btw, my cancer center sends me bills for treatment at the same time they bill my insurance company.  They are billing about $4,500 for each chemo tx (not including onc appt).  But the neulasta shot is being billed at over $8,000!  How could someone without insurance possibly do this?  I guess they obviously couldn't. 

I think several of us have treatments this week.  I am really not looking forward to it. 

Thanks to all of you for being there.

Psalm ~ I don't know what type of chemo you are getting but describing your symptoms I will say maybe Taxol or Taxotere and Cytoxin? !  I am sorry you have felt so bad with TX #2.  I too was surprised to see how it hit me so much harder then #1.  But yes you are halfway there and you will and must do this!  Try to stay ahead of the pain with your meds.  I have TX#3 tomorrow I so dread it as #2 had me down and out for about 9 days !!!  And I will still have 5 more to go.  ugh.  Hang in there.  I hope things get better for you really soon.  Drink your water ~ it has to help clear the poison out of our systems.

Healing hugs ~

Alicia

Alicia & LindaJ;

Thanks for the hugs and reassurance, tears streaming down my face.....it's such a blessing to have friends who REALLY know!!  My first thought when I got my phone call was my son and what happens if "it's" really bad?  He's 13, I have missed several basketball games and will definitely miss more.  I just don't have time for this...there's too much else I wanna/gotta do!! You are both absolutely right....as we say "pull up the big girl britches" and go on!!  Thanks for nudging me into "offense" mode again!!  You girls are the greatest!!  Love & Prayers,

Aw Nette glad you had a nice visit with our daughter.  I am almost glad you both had a little breakdown together, sometimes you need that.  And you LOOK good not old !

I don't know how I am getting chemo tomorrow.  I am so wiped out today.  Freezing and so exhausted.  UGH ~

Have a good night all.