April 2010 starting chemo

SGJ05

Finally saw a Nephrologist about the blood in my urine after chemo. He believes I have IgA Nephropathy and the neulasta is setting off the bleeding! It makes sense since I have had protein in my urine since I was a little girl and was told I had a kidney condition, but that the counts were not high enough to warrant a biopsy. So it looks like after chemo. I will have a kidney biopsy and finally be given an official diagnosis. It is kind of a bummer to be dx with this. but if I do have it, I have had it all my life and have no kidney damage thus far. The only bummer about the bleeding is the pain:( I thought I was done bleeding this time round, but it started again last night and the flank pain stinks. I am taking aleve and keeping my fingers crossed it works!!! My nephrologist thought about me not having the Neulasta next time, but still needs to talk to my onc. about this.

Do any of you not get Neulasta or Neupogen? I am on TCH x 6:) If you do not get it, how have your counts been?

DancerMel28

SGJ05 - I'm on TC and have had 2 rounds so far.  I'm not having any shots - there was no mention of it by my Onc at all have only heard about it on here.  My counts were fine after my first round and I had my second without any delay. I'm only a week out from that so we'll see what happens in two weeks when I'm due for my next one.

Overall - this week has played out the same as my first round, though I think it's hit a bit harder.  I had it last friday, and was fine (though a little tired) until the Monday when it really hit, just felt 'blah' and mouth/throat/neck was really sore.  Tuesday was the first time I've had any nausea - took my extra pills and it settled but didn't really feel like eating at all - which is the first time so far.  By Thursday was feeling much better and was able to get out and about (was going stir crazy being stuck at home!!!).  Friday - no taste buds whatsoever!! Am feeling a bit tired but am just trying to rest when I need it.

Hoping everyone is coping ok.  :-)

ellen_1959

I am on TC and after first round had Neulasta. Bad bad reaction with severe bone pain. Didn't expect that. Had chemo tonight and the onc wasn't there but nurse said I only need to take 1/2 dose tomorrow.

My White blood counts were 8.8 and I googled normal range and found 4-11. But I don't really know if I'm looking at the right numbers. I would really like to NOT take the Neulasta because I dont' think I need it and the pain was really bad.

I saw in the posts that Claritin helps so I took some a short while ago.

Another FYI....I had a bad reaction to Taxotere this second time....immediately I became very ill, hallucinated, couldn't breathe and was extremely dizzy. It was scary but it was short lasted and they gave my hydrocortisone I believe to relieve the symptoms. They also gave me oxygen and monitored by oxgen levels.  They restarted the Taxotere after about a half hour when I was stable

Hope this information was helpful. 

.

ellen_1959

Emme

I feel your pain. I didn't expect the shock of losing my hair so quickly to affect me. I have a convertible and after day 10 of first treatment it was flying off my head in the car - it was funny but scary!  I noticed you are from Connecticut - I was up there visiting my son at college last week when my hair fell out!  I wish I knew..we couldn't have got buzzed together...LOL

I had to get an emergency buzz but in the salon also. Not fun. People just don't understand I still can't get used to the new look (makes it all too real!) so I'm been wearing a wig and am going to go to one of those classes sponsored by Cancer Society for Beauty Tips (Can't remember name...chemo brain..just had a brutal round!)

FYI -I'll be back in Connecticut in July after my last round!

arubajan05

DancerMel28~ hi! Looks like I am on the same TC as you are, 4 rounds and had my 2nd round on the 17th (next one June 7). I agree this time around has been a bit harder, seems very similar to your experience and I too had nausea I didn't have the first time around. Question for you... do have a severe sore throat? I had a sore throat, from the dry mouth, the first time, but this round it it seems much worse... for example, it's keeping me up tonight...If so, any great ideas to sooth it?  I am using Biotene mouthwash but that doesn't really help the throat.... so far the ice cream I am eating is not helping my waistline...lol

Hugs to all and I wish for you a long weekend free of SE's!!!

JenC

arubajan05 - Sorry about the sore throat.  I had that my first round of AC.  they did not think it was full blown thrust but they gave me a prescription for the "magic mouthwash" and it helped tremedously.  You swallow it to so it numbs your mouth and throat for a while at least so you can eat without any pain.  It seemed to go away after about 5 days of using the mouthwash.  Best of luck with it.  Hope everyone has a good weekend.

kad22

Happy Memorial Day weekend to everyone - hopefully it will be an SE free weekend for all!

 Well done with my 3rd AC one more to go and then 12 rounds of Taxol - weekly. I am really scared of this because I don't have a PICC line and really don't want one!

I am also wanting to rant today - sorry! I hate being bald expecially during summer!!! what the .... I still need to shave my legs but my little 1/4 inch hairs on my head are coming out faster and faster almost totally bald - yuck! I wish it would grow back during the Taxol treatments - oh to wish!

 My waist line is not doing well either - really need to exercise but it just sooo hard to find the energy! Did plant my veggie garden - yeah - but was totally shaken from doing it - sweating, shaking hands and tired!! But happy I did it!

Well that's it from me for now - (((( HUGS )))) to all!

SGJ05

DancerMel28 and Arubajan-Sorry this cycle was rougher on the both of you. My second cycle was by far my worst, but my third was my best. Hopefully your next cycle will be better. I hope you both are enjoying the long weekend.

Ellen_1959--Sorry to hear about your Taxotere reaction, that sounds very scary. And as for the Claritin, I have taken it the day before chemo. and 3 days after the Neulasta shot and I have had 0 bone pain, I hope it works for you too!!!

Kad22--I am with you on the baldness:( My favorite is the folliculitis I keep getting before a major fall out. Nothing like sores on your bald head to boost the 'ole' self esteem,lol. And I am still shaving the legs too, but am not having to do it everyday anymore. It would be nice if we could just loose the leg and arm hair, but keep our head hair, wouldn't it:) I hope you are able to enjoy the weekend.

Thanks for your reponses:) I am going to ask my onc. if we could try a round without the Neulasta or at half dose. I am still having bouts of blood in my urine and I would love to avoid making it worse next week after my next cycle! I wouldn't mind so much if I had it, but the pain is a pain.

Hope everyone is having a great saturday with no side effects!!!!

peacelovedogs

Kad22 - I hear you on shaving the legs!  I have lost hair pretty much everywhere else but my legs continue to stay the same length and I am not allowed to shave since my WBC counts keep getting so low.  Nice in Florida...lol

About weight - I have heard that most women gain weight with BC - I however have been losing.  I can't say that it isn't needed but my onc is worried about how much I lost between my 2nd and 3rd treatment (AC - 9 lbs in 2 weeks).  I try to eat but the foods that I seem to crave and tolerate are low calorie (applesauce, oatmeal, fruit cups, etc.) and I am worried that if I lose more this time she will adjust my does again (last time they had to adjust due to my weight dropping, but she mentioned adjusting to keep me from dropping more weight).  Any ideas on high calorie things that you seem to tolerate?  I tried a smoothie but the acid from the juices were too much, milk shakes work here and there...

Then on to my other SE...yeast infection, hemoroids, constipation and a cold in my chest that is sucking...can it be an more sexy to go through this??    Oh well, if I can get "regular" and make the hemi go away, I can handle everything else!!!!  That is worse than anything I have ever felt!  I can not imagine dealing with this much longer.  Stool softeners 2x per day and wanting to pass out at the thought of going...nice.

Can you tell it has been a rough one for me?  lol  I really shouldn't complain because it could be worse but this does suck and you ladies understand that we can't be positive 24/7.

Oh, has anyone noticed that their nails are harder?  I had fake nails for years and had to get them removed before my first round of chemo.  This leaves your nails a mess - brittle and peeling.  It generally takes a good 6 months before the nails are strong again.  Mine are stronger than ever now...after 6 weeks.  I do have a bit of the black powder look on the moons on a coiple of them though.  Just a strange observation that I was wondering about...

shygal

Raerae I too have noticed that my nails are very strong and growing and I'm on Taxotere which can cause you to lose your nails.  However, I've had very little hair regrowth on my legs and need to shave them about once every 3 or 4 weeks.  I just finished my 3rd round of TC and it was the hardest yet. 

marcy4

Raerae

I got jars of baby food prunes and used them to help keep on top of constipation. You may want to give that a try.

DancerMel28

Hi arubajan05!  Yes the sore throat has been present both times. I have had my chemo on Fridays and both times by Monday I had a really sore neck and throat.  The sore throat has stuck around a bit longer this time - I've just been putting up with it mainly. Ice-cream definitely helps as does milk/dairy in general funnily enough.  Don't know what the solution is at this stage.

I have been feeling a lot better this weekend - I'm a bit tired today as I had big day yesterday (teaching ballet and then out for tea for a family birthday), so I'm taking it easy today!  This winter weather makes it easy to stay inside and curl up with a good book!

DancerMel28

Oh I forgot to add - funny story!!

At ballet yesterday I had my little tiny tots (3-4 yr olds) and it's the first time they've seen me with a scarf on.  One of the little darlings said to me "why are you wearing that?" pointing at my head. I said that my hair had fallen out so that's why I got to wear some pretty scarves. She replied "You're hair fell out!!! But why?" and the look on her face was just gorgeous - it wasn't a scared look but a look of absolute wonderment that it was possible for hair to fall out.  So nice to have a cute moment rather than rude stares

peacelovedogs

Dancer - that is sweet.  Kids are the best. 

My niece is 7 and was just learning about how salamanders can regrow limbs if they lose them, when she was told about my cancer.  They told her that I would have surgery and my breasts would be removed - well she asked if they would grow back like a salamanders tail.  That still makes me laugh.

Marcy - Prunes are just not one of the foods I can do.  I need to search for other foods that are good like that.

Char2010

Dried apricot and almonds are good as well.

JenC

raerae7074 - that is funny.  The things that kids come out with.  My 5 year old son told his teacher that mommy gets to play dressup every day now and wear hats and wigs:)  Keeps me in good spritis thats for sure.

LauraM

Raeann - I am with you on everything you wrote above.   I can handle the chemo and the nausea, I can even handle the mouth sores.. which suck.  (I didn't know there was a "magic mouthwash" until I read it in the posts today.  I am going to call my doc tomorrow for a script.)  But the hemi's are the worst thing I have ever felt.  I am taking stool softeners each day and they are not helping at all.  I have been using tucks wipes and preparation H cream for the last 3 days and they are starting to feel a little better today but they still kill me when I go.   Last time my constipation only lasted a day or two and then it was fine, I have my 3rd AC treatment on this coming Thursday so I am getting nervous that it is going to be worse this time.  ugh!  I hope you feel better!

JenC

Question for anyone who has had stitch abseses on port.  I had one prior to my 2nd AC and they had to delay it a week so I could take antibiotics.  I am scheduled for my 3rd AC tomorros and I have another abses starting in the same spot.  This is getting rediculous.  I will talk with the PA tomorrow AM before my AC and I am hoping if it has not "erupted" yet that they can still go forward with treatment so I dont have to put it off another week.  Not sure about the rest of you but I plan my life around these treatments and they have already been screwed up once and now my son graduates from Kindergarden next friday so since my AC is supposed to be this week I planned a big dinner party for the family next friday night, now if I have to have treatment next Wednesday there goes that.  I feel like I have been through enought I dont need this crap on top of it all.  I am half tempted to tell them forget it I am done with chemo.  I know that is not the smart thing to do I am just really frustrated right now, knowing that the end may be prolonged even further.  I wish there was some other way to have treatment...  Sorry to be ranting, just one of those days..

 Hope you all have a good day.

SGJ05

Hi JenC,

 I had a stitch absess along my breast incision line, it opened up and oozed a bit-blah!! My onc. didn't cancel my treatment, but then again it was along my breast incision line and not my port. I am keeping my fingers crossed that yours does not get canceled. By the way, I also have a kindergartener, her last day is today:( I am so sad I don't have anymore babies, my girls will be in 1st grade, 4th grade, and a sophomore next year--where does the time go?

**I am going in for my BRCA results today:) Would you all keep your fingers crossed it is negative--Thanks!

Emme

HI Everyone~

I had my 3rd of 4 AC last friday.  I'm beat today and going in for fluids to help with the fatigue and nausea.  I had some hairloss questions.  my hair didn't all fall out it is very patchy...but i am still having to shave  my legs.  NOT FAIR!  i ws looking forward to not having to shave the legs for the summer!   lol  A little pay off.

Emme

JenC

SGJ05 - I have no idea where the time goes. Just yesterday it seems like he was learing to walk:( This is the second absces I have had in the same sport and last time they cancelled treatment because it is close to the cathider and had to put me on antibiotics. We shall see what the surgion sais today. Just getting frustrated...

JenC

So just got back from the surgions office and yup, it is an infection no chemo this week (again). I have to have a culture done of the infection tomorrow so they can see what keeps trying to "grow" there. I am on dense dose AC so how effective can this be that I went three weeks between one and two due to infection and will have to go 4 weeks with this one because by the time I am done antibiotics I will be on vacation and out of the state? I am getting so frustrated. Does anyone know anything about chemo pills and what the difference is between having iv treatment and pills?

peacelovedogs

Char2010 - Dried apricots and almonds!  Thankfully, I LOVE those!!!!  Thank you for the tip!!!!

LauraM - I hear ya!  Mine will not go away!  I am taking stool softeners 2x per day and when I "go" I am reading to cry.  Put that on top of the yeast infection caused by being on antibiotics for low WBC's and I would just rather not deal with that region at all.

JenC - Can they just not use your port this time?  I would see about that rather than putting it off another week - or is it more the infection that they are worried about and not that it is near the port?

caltex_catlady

JenC: So sorry to hear about the infection and delays. That sucks. I'm on dose dense as well, but my onc never discussed what would happen if we needed to postpone any treatments. The only person I know who has used chemo by pill rather than IV had a brain tumor, not BC. Since the chemo can drop your WBC, they probably don't want that to happen while your WBCs are trying to fight an infection.

I guess I'm not the only one wishing the leg hair would just go already. It's less but not all gone. I'd figured that having short hairs falling all over the place would be less annoying and hard to clean up than longer hairs, and I was told not to shave with a razor any more, so I haven't shaved since my surgery. I did just order an electric shaver, though, which I think I'm safe using. Can't wait to give it a try.

Karen

dutchgirl6

JenC, that sucks about the infection and delay in your treatment.  Hopefully they can get a handle on it soon and you can get back on track with your chemo schedule.  You go right ahead and rant, girl, this is the one place where you can get away with it, and you know that someone else can relate to your struggles.  Congrats on your son graduating kindergarten, that's a milestone.  I hope that you will feel well enough to help him celebrate next week.  I miss those days, my oldest just turned 23 and my baby is 20.  Time really does fly!

RaeRae, I'm sorry that you are struggling with your "nether region".  I had one 'roid last cycle that I chose to ignore, and when I came home from an hour long dog walk, it was bleeding!  I am much more vigilant this time around, and so far have been able to avoid this unpleasantness.   Are you eating lots of yogurt for your yeast infection?

Karen, good luck with the electric razor, I bought one and it didn't work at all, and it irritated the skin under my arms, so I returned it.  Then I reasoned with myself that I haven't cut myself shaving in years, so as far as I was concerned it was less risky with the manual razor than with the electric one.  All that redness couldn't have been good either.  I hope you have a better experience.  

Emme, I hope that the fluids help with the fatigue, take it easy now.  

I had my blood pressure taken today on my ankle, too wierd.  

JenC

Thanks everyone.  I talked to my onc today and since I will be going on vacation I am waiting until the 18th for my 3rd AC.  He said that I will not have to start over it is just the longer between the less effect it may have but he thinks things will be ok.  He talked about "replacing" the port but the surgion thinks that with the getting a sample of what the infection is we can be proactive and save the port.  I hope so because I really dont want to have to have it replaced...  caltex_catlady - I to want the leg hair to stop.  I only have to shave once a week and it is not much but it is still anoying.  Armpit hair has stopped growing though so I guess that is a plus:)

SGJ05

Got my BRCA annd BART results today and they are both negative for mutations-YAY!! I was so worried about the results, especially given that I have 3 girls:) So great news today:)

Emme--I am still shaving my legs too and it stinks:) However, I only have to shave every few days rather than everyday like I used too:)

JenC-I am so sorry you have another infection and chemo. is postponed!! I can only imagine how frustrating that must be:( I am sending healing thoughts your way that the infection subsides quickly. As for a pill, I have a friend who is taking oral chemo. drugs, but she has colon cancer not breast cancer, nit sure if they use oral drugs for breast cancer or not?

Emme

Ohhh the fluids helpp so much. the nausea is gone!  I think the fatigue is just from the chemo. 

For all of you on DD AC are yo finding that fatigue is getting much worse as each treatment progresses?

 I read in one of the post about a sore throat.  I am on AC dose dense and my onc said that was a SE.  I developed the sore throat and was worried I was getting strep.  No fever developed and the sore throat went away in 4 days...I asked my ncologist and he said that was a SE...who knew?

No one told me not to use razors...hummm...I still am.  I too am careful and I haven't cut myself in years.......looking for some wood to knock on.

Jen I was chemo pills my first time around.  I took lapatanib (Tykerb).  I took it daily with a taxol infusion weekly.  I was in a clinical trial.  I had 6 weeks of this therapy.  When I had the bilat mx.  the patholgy came back excellent.  There was only precancerous cells left.   Originally, the cancer was 4.5 cm.  Amazing!  What was the name of the oral medication they want you to use?

Wishing all of you a wonderful night and even better day tomorrow!

Em

westiemom

Emme, so glad i found this post. i'm on dose dense, last friday was #2 infusion (have 4 total) and i have extreme fatigue, didn't have the fatigue after the 1st infusion, and this time around i had a sore throat, the sore throat is going away, i had no idea this was a side effect - sort of relieved to know that, also got the worst taste in my mouth when the sore throat was at its worst. today i went to onc to get a shot for low white count. have a great evening....

LauraM

Jen C -  I am right there with you with the stitch abscesses.   I have been fighting them since my surgery in February.  I had the TRAM procedure and along my belly incision my body had decided it can not break down the dissolving stitches and I keep getting abscess and then it spits out the stitches.   I am 3 1/2 months since my surgery and I went to the doctors yesterday and there another abscess they had to open. (this happened in another spot right before my 2nd tx also)   I go back to my plastic surgeon tomorrow right before my scheduled chemo tx.   My onc will look at my stomach again tomorrow and will end of calling my ps and ask him what he thinks just like last time.  They almost postponed me, but decided to go ahead with tx because once they open up the site, it drains well and is not really a true infection just my body rejecting the stitches.   I am not sure what my onc will say tomorrow since I now have two open areas on my stomach.  She may postpone. 

When they put in my port the other day, the stitches also formed a little abscess and then pushed the stitch out to the surface, once it could be pulled out, the abscess went away on it's own.  I am pretty fed up with this whole thing, it seems like it is a never ending process with me having open wounds on my stomach.  I have been wearing pads accross my stomach for drainage for way to long.  I now have to be careful on what kind of pad I wear because I have started to have a latex allergy from the original pads I used.  I now have to get latex free.