Starting Chemo July 2012

Madelyn

Roadwarrior- Are you still on Neulasta?  I don't have to have that shot on Taxol.  

roadwarrior28

Madelyn -I am. I asked my onc about it and she says since we wanted to stick close to the every other week timeline, it was best to keep going with Neulasta

roadwarrior28

So it's been 4 days since my first Taxol treatment, and I'm experiencing some weird side effects - was wondering if anyone else has been through this. I don't have the burning/tingling sensation that I've heard of with peripheral neuropathy. Instead, I just have some pain in my feet and hands...sort of feels like I've been typing too long. I also feel like my left hand is swollen - I had trouble making a fist when I woke up at night. Also experiencing some back pain...

mamabr

Yes, I have had some pain after the Taxol. The pain has hit 3 and 4 days after treatment, probably after the steroids have worn off. I have pain in my lower back and legs, thighs, calves. Sometimes it feels like a pebble ricocheting around. For me, the Taxol is not as extreme as AC, I don't go to the real low of AC, but I wouldn't say I am popping back to 100% between Taxol treatments. I am pretty tired and kind of hover around 70%. 

boobzilla

Mamabear-that's a great characterization of what this strange pain feels like. I have been getting all 3 of my meds in each infusion, every 3 weeks, and I, too feel a weird stabbing all over, like something is racing around my body. The Allegra I take before my Neulasta shot helps with that bone pain issue, but I am not sure if the Taxotere pain is different or if they are all blending together since I get 3 meds at once, or if I am not actually experiencing Taxotere pain at all, but rather bone pain from Neulasta. Hmmmmmm....

mamabr

I go in tomorrow for T#3. This weekend should indicate how cumulative the effects are going to be. As I recall, you are still getting the Neulasta with the Tax?? I'm not getting the Neulasta any more, but the doc said the pain has to do with rebuilding blood counts?? I don't know, I am just going with the flow and trying to take whatever comes. Luckily, I haven't caught any bugs, knock on wood, because I think that would be worse than the bone pain. Going to get the blood draw!!

_Ann_

Oh my gosh I'm one cranky cancer patient today.  I've been in insurance company hell trying to follow up on how the ball got dropped on my taxol pre-authorization.  It was ordered last Wednesday, clinic tells me they submitted it, insurance company says they don't have it.  Finally got hold of the person in the clinic who was supposedly handling it, she informed me she's not allowed to talk to patients and I needed to call member relations!  I want to drive over there and punch somebody.  

To add to the joy, the whole time I was on hold with the insurance company, a recording was playing saying "did you know breast cancer is the number one cancer of women?  Talk with one of our expert customer service representatives about your mammogram benefit today."   What I'd really like to hear is "Did you know that mammograms are useless on dense breast tissue?  Talk to one of our experts about your ultrasound+MRI benefit today".

Grrr!!!! 

boobzilla

Mama-I think you mean me with the Tax and Neulasta-and yes, I am taking both...so yes a little harder for me to figure out where the stinging and 'shishkabob up butt' feeling is coming from. But I've read that your pelvic and leg areas make a lot of the white blood cells, so when they give you the shot, those areas are more likely to hurt, so maybe that's where it's from. Who knows-just trying to keep my body upright and strong. My boss is out with the flu, one of my co-workers is out with Pneumonia, and my other co-worker has been sneezing and sniffling on the other side of my cube for days. Since I was advised to not take any vitamins as it could interfere with my chemo, I am hoping that my crazy nutritious eating since this nightmare began, together with the white blood cell shot to boost my system, will save me from any other BS invaders, LOL. Stay strong mama, hope blood draw went well.

Ann-we need to snip that 'on hold' episode out and put it into the 'Chemo Chronicles' book to come. I have dense breasts too, and felt the same when I got a bill for my MRI the breast surgeon initially ordered after the 'staple' Mammogram, which is basically like taking a polaroid in the digital age. But insurance company told me to ignore the bill and that it had been 'put through wrong'. Breast care advisor and customer service resolved this on my behalf. Hang in there, but the phone on speaker and get yourself a 'hang from the ceiling' kickbox bag so when those annoying recordings (last thing we need to hear) come on, you have 'something' to punch. I hope things get easier for you with the red tape, ugh.

Have follow up with my breast surgeon tomorrow-wonderful surgeon-nil bedside manner, so my stresslevel always goes WAY up before these appointments. Having neo chemo so she is checking tumor for size differences....oh happy joy joy...another sleepless night..... 

_Ann_

Boobzilla you cracked me up (har har) with the "shiskabob up butt" description.   It's comforting to hear that about pelvis pain and white blood cells.  I had pain in one side of my hip after every neulasta.  Even though I know it causes bone pain it's hard not to be worrying it's bone mets already.

My "nurse coordinator" at my insurance company has offered to help with my pre-auth.  Pretty ironic that I need an advocate inside the system helping me get what I need out of the same system.  She said their chemo pre-auth process changed, which probably explains the delay/snafu.  Oh well it will probably be ironed out in a couple days at least.  Ceiling punching bag-- great idea!

I hope you catch your breast surgeon on a rare good mood day.  My MO is the scary one.  I work myself up before every encounter, and consider it a success if I get even half my questions answered.  I'm truly counting on the theory that bedside manner and medical competence are inversely related.

boobzilla

Ann-haha-glad to make you smile. Definitely agree with your last statement! I wish you all the best in getting the insurance matters resolved-definitely not another stress we need on top of everything else

natL12

Insurance company woes....oh dear!

Mine are hospital woes.  I go  to the nearest hospital (only 1/2 hr. away from home_) for my neulasta shot. Even though I pre-register by internet for it, they always claim I am not scheduled. Has happened every time.  So i go through a long, long wait to get it.  The nurses are fine, it's just the registration process that's screwed up.  I THINK THEY ARE JUST PISSED THAT I DON'T GO THERE FOR CHEMO! i usually comment to the registration person that THIS IS THE REASON I DON'T COME TO THIS HOSPITAL IF I CAN POSSIBLY AVOID IT.  I'm sure that doesn't help my case, but it makes me feel a bunch better.  

 (My hospital for chemo had to find a MO with privileges at that hospital who also had privileges at the nearby hospital to order the neulasta.  I have never even met this doctor.  but she took care of the order for them.  Red tape....)

My ankles and legs are swollen.  The info sheet I received about Taxotere listed that as a common side effect (on page 2) but (on page 3) said to call the doctor if you experienced ankles swollen.  So I think I will call and see what they say. Has anyone else had this SE?

Nat

stride

Things I would rather do than go to chemo today:

1. Anything

2. See 1 

teeballmom

Natl12: I met a lady last week that was having that SE of swollen ankles, too.



Stride: Me, too. I just don't want to go today. I don't want to feel that out of it feeling I get each time with the Benadryl. I want to curl up in front of the tv and watch paint dry on HGTV.

mamabr

Me, too....

Lifeonitsside

I have chemo tomorrow and, ladies, I agree.



My feet/ankles are not swollen but I am experiencing some neuropathy in my left foot, in my toes mainly. Nothing too bad, they just feel like they're asleep. Glad it's not in my hands. My fault because I forgot to take the glutamine the last round. It has no taste but it's gritty and makes me want to vomit when I drink it. But I guess I need to suck it up and do it so I don't lose any more feeling.



Otherwise, doing okay. SE's are still tolerable. But like all of you, dreading chemo tomorrow. Although it's my fourth and means there's only two more! Trying to focus on that.



Sending love to you all to get through these next few days.

_Ann_

NatL12, that neulasta situation is nuts.  The hospital and insurance system is so messed up it's amazing more of us don't die of sheer beaurocratic screw-ups.  I like it that you gripe at them every time, even if it may not be so helpful :-)

Stride, you said it!

Lifeonitsside, I'm curious if the glutamine is something your medical team recommended and how to use it.  I was told there wasn't evidence for anything to help neuropathy (well actually I only asked about B6 and B12).  I hope your toes come back to life soon.

I realized that in two weeks I have an MRI and ultrasound on the same day in two different facilities, plus I'll need my pre-chemo blood draw that same day, followed the next day by my MO consult plus my first Taxol.   That's three needle sticks and five appointments in two days.  It's gonna be a very not fun week.

roadwarrior28

Talking about Neulasta...I'm getting them at the Cleveland Clinic and they charge $13,000 per shot! Granted my insurance pays only half because that's the negotiated rate, but $13K is just a little ridiculous

Maddie57

Hi Ladies- nice to catch up with you all. I had my third taxoter treatment on Monday and they gave me hydrocortisone before they started, as i am allergic to the stuff. It really helped - I wasn't pinned to the seat with pain. Only one more to go - yeah!! 

I have had 1 treatment without Neulasta and 2 without, so may be able to answer some of your questions - although we are all different. My personal experience is that the joint pain from the Neurlasta is not as bad. It seems to hit the long bones and the hips a bit. It also makes your bones feel quivery - if you know what I mean. It seems to kick in the day after the injection.

The Taxotere pains were much more severe with me and seem to kick in 5/6 days after treatment. It seems to affect your sternum,  whole back including your neck and hips. It also hits the wrists and hands. Road warrior - your pains sound like the Taxotere pain. With my first Taxotere treatment,morphine every 2 hours did not touch the pain, but at 3 am a little nurse came in and said - I know this will sound strange when the morphine is not working too well but I am bringing you a heat pad and 2 paracetamol. Well guess what ladies - that worked better than anything - so for those of you with back pain try lying on a heat pad. Hope it works!

The numb with the toes comes and goes I find. The fingers started going numb from the 2nd treatment but are still not too bad. if any of you are suffering terribly with SE's - tell your Oncologist. They may be able to lower the dose, and this helps unbelievably.

I am sorry to hear about all the insurance woes - hope they are all sorted out. Good luck ladies

Maddie57

Hi Ladies- sorry also forgot to tell you. For my second treatment where I did not have the Neulasta injection my neutrophils had dropped to 0.65 so they thought they may not be able to give me my 3rd chemo. Luckily they came up to 13.5 in 2 days so was able to have it. I still think that sounds a bit weird - makes me wonder if they made a mistake- but if you can stick it I think the Neulasta is a good idea.

Don't you hate the steroids the night before chemo. They make me break into a sweat every half an hour, and give me such a stomach ache. Boy will I be glad to drop those.

Have any of you had any luck with bras? I am now wearing something I think my Grandmother may have worn. I have to stuff both cups in different places to make the breasts equal shape and size. Have just had a new wig delivered - it is just a half one, and you wear it with a hat or cap - it seems much more comfortable. I felt like a sheep dog in the other one!

Boobzilla - I hope you are okay with all the bugs going around your office. Try taking garlic tablets - they are a great natural antibiotic

Melrosemelrose

Maddie57- I'm 6 weeks PFC and just drop by to give everyone some "Atta girls!!!!" and let you know there is life and hair after chemo.   My head hair is coming back along with my eyebrows and eyelashes.  As for the bras, I've been buying sports bras  ($13.00) from Marshalls/ TJMaxx that have removable inserts.  You can add whatever foobs you need to for with no problem.  I've been buying a size larger than I normally would wear because they don't feel so tight.  At Forever21, they sell for $8.00 this bra and boy short underwear set--- the bra also has removable inserts and comes in beige as well as some crazy colors. 

Wishing everyone an easy time in the chemo lounger this week and minimal side effects!!!!

_Ann_

Maddie57, thank you so much for the tip about heating pads.  Finally I'm getting some relief from the dull aching hip pain I've had all week.  It works!

Madelyn

Wow, seems like our Taxol experiences are all different. I take it weekly and just had my 3rd treatment today. I DO NOT get a neulasta shot before taxol, I did before AC. Because I do the spread out 12 weekly taxol, I get the steroids with my treatment, not the night before. I guess the trade off Is lower side effects but longer treatment time. So interesting to read everyone's experience. At night sometimes I experience a dull ache in my legs, my onc advised always wearing slippers around the house, especially on cold bathroom floors. The cold floors can aggravate nerves in the feet--seems to work well so far! Also, the accupuncture is great! I know some of you get the herceptin also, I don't so how is that going? Wishing all of you minimal side effects regardless of treatment plans.....HUGS

roadwarrior28

I get Taxol bi-weekly and a Neulasta shot the day after. I get steroids with my treatment as well - I'm usually there the entire day, but I guess that's better than coming in the day before. I'm trying acupucture Monday!

emilybrooke

I am two days out from my first Taxol and Herceptin treatment. The nurses explained that since I had both on the same day it might be difficult to differentiate the SEs for each one. They gave me steroids, benadryl, and pepcid drips before starting the Taxol. Taxol was a three hour infusion and the herceptin was 1.5 hours. They explained that the first round of Herceptin is the longest and each one after will be 30 min. I was there for 6.5 hours on Monday. So far I am experiencing some dull aches in joints that I typically have problems with - my right ankle, my right shoulder and my knee. I had a bit of pain in my sternum earlier today but it seems to have faded.

My onc is only giving me the Neulasta after the second round of Taxol which has me a bit concerned. I am not missing the side effects that I had from the shot but I also want to protect myself from germs.

Lifeonitsside

Ann - My nutritionist recommended glutamine and I took it for the first two rounds and had no problems. But the grittiness just gags me. However, since it seemed to help, I need to make sure to take it this time.



My back is hurting again. Don't know if it's Taxotere or what. Seems to come and go. I'm not having any of the other aches you all are talking about, just my usual ones. But am also really, really tired today, which is weird since I'm on the end of my three week cycle and go in tomorrow.



My darling BF is in England and France this week, so I'm missing him terribly on top of evening else.



Ah, well, just digging in and getting through.

virginiab

Life--

I'm really tired, too! We've been on the same chemo schedule and this round I am just feeling worn down. A few tiresome symptoms (after the first 10 days of feeling like I have the flu or something), but just tired. Maybe it's just a cumulative effect -- or maybe some astrologer could explain it as having to do with the planets. Whatever the cause, I could really use a few nights of sleeping 10 to 12 hours....

Lifeonitsside

Virginiab - Yeah, I don't know what it is. I was feeling okay, the new normal, and then today, bam. I can't get off the couch! My back especially feels tired, like it can't hold me up. I almost had to sit down while I was taking a shower! Ugh! Can't wait for all of this to be over!



However, on the plus side, sold a couple of watercolor paintings and was just asked to not only exhibit my paintings at a very well-respected theater company in LA but was also asked to do a painting on one of the walls of their cafe! Now if only my energy can hold up to do this! Exhibiting existing paintings but am very excited about doing the wall.

teeballmom

3rd taxol today and 9 to go. Yay!!!!



Lifeonitsside: My pharmacist/herbalist has me taking my glutamine with 8oz of juice otherwise I gag. Do you think you would be allowed to do that? It does help.

Lifeonitsside

Teeballmom - I have tried it with juice and it still makes me gag. Something about the consistency of it just doesn't agree with me.

Itsalltemporary

Hi Melrosemelrose - thanks for checking back in and hope you are enjoying life on the other side of the BGC. Can you tell me more about the hair regrowth? When you say it's growing - are you close to having a cute pixie length hair after 6 weeks, or is it just starting to grow back now? Just trying to get a sense of how long I will have to wear this wig!

Got brave this evening and went without any covering to my yoga class - woohoo! It was quite freeing! And very nice not to have to deal with sweaty hair in my face or the pony tail that pokes into your head when you are doing exercises on your back. Its funny - people were extra nice. They kept offering to go get equipment for me (the straps, the blocks or the rubber ball). This was my first time exercising since I started chemo (I have completed 4 of 6 TC treatments). Felt really good to work out again - although I couldn't do half of what I used to do. Really felt the affects of all of this.