February 2011 chemo pals

Question  I have what I would call a weak leg.  It starts around my hip and goes down my leg.  Started last night.  Yesterday was my low point so I am hoping the leg will come back to life.  Hard to walk as it feels like it wants to give out.  Has anyone else experiences anything like this.  I go for my blood counts today and I will ask the doctor about it.

Cindy

GG - you need to call your Oncologist! It is not your age girl! I am 37 and had my first treatment of TC on Feb 3rd. I was also fine for the first 3 days, just tired and no appetite. I took all of the meds they gave for nausea, got the neulasta shot so I took claritin but still had very painful bone aches. My feet even hurt to walk. NOT YOUR AGE or FITNESS! As for the fever - it is not to be ignored! I did for 3 days! I thought this was the normal "flu-like symptoms' that they refer to?? I hate needles and did NOT want to go the Onc as I knew they would pump me with fluids so I sucked it up for days!  By day 3 of a high fever and nausea, my boyfriend dragged me to the Dr. as you are supposed to go if you remotely get a fever over 100! We are not supposed to be ill! Turned out that I was admitted to the hospital and had an appendix ready to rupture!! Completely unrelated to the cancer or the chemo but the fever indicated that I had an infection somewhere in my body! It is not to be ignored and I hope that you will call your Onc ASAP! She actually thought it was cat scrach fever as my nodes on my good side were swollen and I had a cat bite on my other hand (the one where I had full node dissection)! So... could be anything but it is not the chemo giving you the fever.  You must get a thermometer and monitor yourself. The key is NOT to feel bad through this so call your Dr. ever single day if you have to! That is why they are there.  Do you have Ativan? I only took that to sleep and it works pretty well. You need to sleep - even if you sleep all day and up at night - we need all the rest we can!

Be well and know that we are all here to listen and help where we can! Please call your Dr. and fight back!!

Lots of hugs from West Palm Beach!

Mary

Dear Safari,

I did read about your harrowing experience and wondered when this first happened to me if my fever and aches were more than average, and now that you've told me to call my breast surgeon, I have decided I will get a thermometer and, if I get sideswiped again this week and that temp ain't right, my husband can take me to the ER.  See, the last two nights, while bad, are better than it was the previous two nights, so I'm thinking perhaps whatever it was has gone away.  But since reading your advice, husband is going to store today so I'll ask him to get me a thermometer, and if I wake up again tonite or anytime this week, I'll make real sure the temp doesn't warrant a trip to the ER.

PAIN MEDICINE QUESTION:   While I'm on the subject of being in pain, this morning I dragged myself into the shower and GOSH was I ever filthy.  The warm water felt relaxing to my aching muscles.  Could be I did have a little infection and it's gone now, with the shower helping the last bit go away.  But still.....  I'll let you know how things go.  Did any of the rest of you all's docs hear your plea about having terrible body pain and give you something for it?  I was given same stuff I take for my bad legs when they put the portacath in, a small one-time prescription, but that cath didn't hurt at all compared to this other with the fever, but it was better than nothing and prevented me from taking too much of my regular stuff.  But if anybody would like to comment further about pain medication that helps with this, I'd like to know what kind.  Thanks.  GG

dogeyed,

I contact the oncology dept for the smallest things.  Made 3 calls last weekend because there was a mix-up with getting my perscriptions filled prior to 1st treatment.  Made a couple other calls about the Neulasta shot (was it approved to get at home, if not what happens, oh, it's covered if I get it at the hospital, ok I rest easier).  Called and asked for an anti-anxiety med, the nurse said, take one of the Ativan you've been perscribed.  Ok, that works.  Day after chemo I wake up with aches around my chest wall when I take deep breaths.  Ok, I wait to see the doctor in this case since I'll be there at 1 pm.  The nurse says, it's probably due to all the liquids your body took in yesterday during chemo, take another Ativan (that works).  They say use Aleve or Advil if the Neulasta gives me bone pains.  I tell them I'm allergic and am told I can get Vicodan if I need it, just call, but start with Tylenol.  The tylenol helps.  I'm confused about taking the nausea medicine so the nurse explains again to take what I need when I need it.  

Monday I go get bloodwork here in town.  The tech isn't sure I need it every week altho I know I got those instructions correct from onco nurse.  But I call the onco nurse and ask her to explain it all again to me, and she does: get the CBC every Mon and then a more thorough work-up the Monday before chemo.  The one main nurse is Jackie and I just call her for everything and she's great, there's others, like Peg and Kathy, I call each and everyone of them by name when I talk to them just like they are my sisters or neighbors.

If at any time I feel like I want to speak directly to the oncologist herself, I will tell the nurse.  But right now, I'm very comfortable dealing with Jackie and the others.

I hope I don't make this sound like it's about money, because that is not what I intend.  But our health insurance dollars are shelling out a pretty penny for us to get healthy.  We do not need to sit around being miserable waiting for a doctor somewhere down the road to realize we need help.  Be proactive.  Take your health into your own hands.  It is like your money, no one is going to care more about your HEALTH than you are!  And WE  are worth it!

Just got back from my 1st TAC treatment.  I must say I feel perfectly normal - although I expect that to change very quick.   I actually enjoyed the time in the chair after I got over the initial shock and acceptance that I HAD no other choice if I want to be around for my grandbabies.   

I met a super nice lady starting TAC the same day as me and with somewhat the same dx.  It was great to have a chemo pal!!

Well, let's see what the next few days bring. Shot is tomorrow.  ugh 

LOL Kathie, I am now laughing and dreading my first experience tomorrow at the same time!!

I did spend some time at the clinic today and nobody talked to me, so hopefully it will stay that way tomorrow as well. 

Its day 12 and I thought i was prepared for the whole hair thing but when the first chunk was in my comb i lost it. I thought i would handle it a lil more gracefully. ..trying to get the courage to just get it over...how many days do i have before most of its gone?

Day 10 of this treatment and finally I feel pretty darn good.  Blood counts were down again yesterday but not as low as last time.  Now I am having trouble with what I think is sciatica pain.  Goes from my butt down my leg and into my foot.  Hopefully I can get this leg thing straightened out real soon.  Ok I am off to physical therapy.

Have a great day,

Cindy

GG;

Hang on girl!! It WILL get better! I am so glad you got the thermometer but you have to still seek attention if fever is over 100 degrees as it is NOT a symptom of chemo- something else is going on!  I know how the fear and anxiety is overwhelming and the sadness is what gets me most! I would suggest talking to a therapist.  I am fortunate to have a non-profit cancer organization to support us.  They have a therapist and offer classes like yoga and stretching while also massage therapies, healing touch, hypnotherapy, etc... Ask your oncologist for some references.  This board helps but to really get to know other women to talk to is ideal! I am 37 and thought I was just the youngest one and feel so alone! Well, I am not! Please do not give up! You need to fight to get better! Do all you can to fight back and get a new Dr.!! They need to be communicating with you regularly! You need answers! I agree that the unknown is the worst! You have the right for a second opinion and I suggest you get it! I went through 3 BS and 2 oncologists until I was happy! I have my Oncologist's cell phone # and call her ANY time! I would suggest you also request ALL paperwork including pathology reports.  I have everything filed and there are no mysteries! This way I can go home and google all I want to gain even more info.

My thoughts and prayers are with you as they are with everyone on here! Call your Dr. and get some answers! It will help! Take care and buy yourself some beautiful flowers!

Many hugs from West Palm Beach!

Mary

OH not sure what the hell is happening here .... it's day 6 for me and I can't hardly function, I'll cry at anything even if it isn't sad ... I think I'm not suppose to be on this AC crap ... in fact, I'm not even sure why I am ,,,, it's just STANDARD or something for my grade/type/personality/size/whatever .... after day 10 it gets better?  Is that how it's suppose to go?  Is it normal to forget everything ... almost immediately ,,, where the next word is hard to find?  I'm a mess and I thank you for listening to this because I'm sure it sounds really stupid.

Hi All,

fuzzylemon - I am day 6 out too - different regimen, but I am not feeling that great either!  Don't be down on yourself.  I am sure you are stressed and that combined with SE is making you forget and be emotional.  I have not been sleeping - like, at all - and I am finding it is difficult to concentrate.  I also have some ringing in my ears which is super annoying.  I keep waiting and each day is getting a little better but I am really tired and have no appetite.  So far today is my first day without diarrhea. Yay! I just fed half of my sandwich to the dog because I couldn't eat it.  It is hard to guage how much fatigue is from the treatment and how much from not sleeping or eating much. 

I am sure your regimen is based on your stats - if you're not sure ask your onc to explain it.  The drug combination should be tailored to your hormonal receptors and tumor size/grade, as well as node status.

All you can do is take it one day (or minute!) at a time.  Nobody will fault you for the way you feel right now - especially us!

I hope you feel better soon!

Kathie

Hi Girlies!!!!  I to was a weeping one the other day.  I think its normal.  Here we dont have to put on a brave front for anyone.  We just get to be whatever we want.  We are going through so much that sometimes its more then anyone can handle.  I do go crazy when I cry, but I think I have a right to now.  Go ahead and cry aeay its ok.

My daughter had gotten a tat that is a huge pink ribbon that has boxing gloves dangling from it.  She also put my aunties, sissies, and my intals on it.  She did this as a tribute to us gals who are survivors in the family.

Cindy I hope counts go up for ya.  Its good to see your doing ok.  I had a problem with the hips last week.  The doc says its from the Nuelasta shot.  I said even 10 days out and he says yea.  He says hed give me some Vicidon but I didnt take him up on it.  Mine went away after 2 days.  I dont know if this helps ya or not.  Good Luck.

I hope things get better for all you gals starting up with treatment.  I do know from personal experence that my 2 treatment was so much better then the first.  I hope it goes the same for you all as well.  I think it was just a matter of getting the meds figured out.

Hang in there dogeyed.  I  will keep you in my prayers.  I have seen some gals who had them that size and they are doing good.  I know when they dont know much its mind numbing.  Your going crazy cause you want answers.  Hang in there.  We are here for you.