November 2009-Starting Chemo

I hope everyone is hanging in there. I have discovered that there is no way the doctors can prepare me for the side effects. Everyone is too unique and though they may have a general idea of what is "normal" - It's impossible to tell. If I really have H1N1 then I'm glad - because I now have hope that my 2nd round of chemo should be MUCH easier than this one. While I had extreme joint pain from the Cytoxan and Taxotere, I received a Nuelasta shot here in the hospital and had NO side effects from that, other than my WBC count jumped from 1 to 12 in about 24 hours after the shot. The plan now is to include it the day after chemo which is fine by me.

Today is day 13 after first treatment. Yesterday the crown of my head began to feel very tender and sore. Like a bad ponytail (everyone knows what that feels like I hope) had been put in too long. Indeed after "googling" I found that is a normal side effect of chemo. Today - my hair began to fall out. Each run through with a brush or my fingers results in dozens of hairs falling out. 

 I don't think I am ready for that though I've been waiting each day for this to happen. If the hospital allows it I think I will have my mom come today and shave my head. Sad thing is I wanted my husband to be with me, but since he is sick with the flu as well now (very bad symptoms, painful) he wouldn't be able to be here. However I just don't think I can wait. I'm worried about the shock factor for him - not seeing me for few days then seeing me shaved...

BrendaSharon:

Thanks so much for your thoughtfulnes....My MIL had PET scan because chest x-ray found new spot, PET scan results today showed that spot as well, but no new ones anywhere else.  She also has a stomach ulcer.  Her lung doctor is looking for a surgeon for her that can perform surgery by deflating only part of her lung, to remove the ca.  Just one lung, she will die, if her lung collapses.  If they can't do surgery she will definitely be getting radiation and chemo. She's 70 and actually a strong woman, but this is scaring her because she's been there, done that and dreads the whole thing.  Yes, please pray for her, my DH, son and FIL.  My heart breaks for her...they won't do surgery til after the 1st of the year, so I'm hoping to be on the mend myself by then and be able to help her.

I pray daily for the the Brave Warrior Sisters and their families who support them.  Without my Husband, son, Mom, my sister, nieces, In-Laws, co-workers, and friends I do NOT think I would be able to do this.  They uplift us, comfort us, endure with us....and I thank GOD for them all.  I am very blessed and continue to pray for many blessings for all of you!!  May you all have healing rest and renewed spirits....!!!

littlebird - I'll bet you felt like saying "See I told you I was Sick!!!"Bad enough to be that sick without dealing with unbelieving people.  My condolences for you FIL. What a worry for you that your family is sick. ((WARM HUG))

Sore crown of the head is a SE. Your hair is letting go.

Psalm21 - Sorry about you nasty SE's, hang in there.

Justmealica - Hope you DH is OK.

SharaD - What a disaster! Glad you're OK now.

BrendaSharon - Yes I am in good shape & should be until 10th when I get my next TX. I am only on AC so I don't get the extreme SE's that others are getting. I am very,very, grateful for that.

My hair is starting to thin and I am getting that funny scalp feeling. So I bought myself a wig today.

Hugs to all the Girls.

Alicia: I am you are able to stay a little bit comfortable today, get some rest.

Mabelle: I am glad your hair stuck around for your social function.

Psalm121: Your family is in my prayers

Suepen: congrats on having a nice head, that is a relief isn't it?

Littlebird: hope you are feeling stronger everyday, I read your poem on another thread (((LittleBird)))

KayH: How do you like the wig, did you get something different or close to your natural hair?

For me, my stubble is coming out, I can rub my head and rub off little pricklies. I am feeling mentally wimpy today, I feel good and don't want to do chemo Monday. It is like volunteering to play speedbump, who wants to get run over a few times?

I also have to debut my baldness at work this weekend (I only work outside of the home on weekends). So I will have to deal with all the sympathetic glances.

Oh well, it builds character right??

Hope everyone has a smooth day.  

Psalm: I'm sorry to hear about your MIL. Warrior power will prevail!

LittleBird: Take it one day at a time. I'm sorry for your family's loss.

Alicia: You and your DH are in my thoughts as well. Keep us informed.

On a personal note, I think I handled TX2 better than the first. I'm so very tired, but at least I'm not walking into walls. I take Reglan before meals and Zofran before bed. By 8 o'clock, I'm ready for bed, but 1 a.m. comes and I am up and wired for sound. I guess 5 hours of sleep is better than no hours.

I'm finally losing my hair. Day 15 and it starting coming out in droves. I have that burning sensation too. I guess it shows that the chemo is working. I'm nervous to say that I think my tumor is shrinking. It feels "different" Not as big.

I just had a crying fit. I feel like the trees in the winter...naked and bitter cold. Come on spring! I'm ready to bloom. I'm just so overwhelmed...pissed, tired, and ready for life to be normal again. Oh well...chin up old girl. I've got some battles to win and a Christmas tree to get up before New Years. Thanks for listening to me ramble. It's been a day...

hi sisters!

sorry i have been quiet but i love to read how you are doing - yes i am in yangon, back home (i am Scottish, but i work here) but internet is very slow and often no access..... so not so many posts from me.

i'm back to bankok on saturay (12th) if blood counts are ok, and next chemo on sunday (13th) - yuck yuck and back into the groundhog fog!  That will be 3 out of 8 - feels like such a long haul still

i'm thinking of you all and keeping up with how everyone is doing.

keep smiling, keep crying and keep posting

love and hugs

philippa

I had my second chemo last week and at that time my oncologist told me that I'd have to start getting a weekly blood draw so they can keep an eye on my white blood count.  I was preparing to go to work on Wednesday morning when the dr. office called telling me I had to come in for a neupogen shot.  Afterwards, I was "grounded", put on house arrest, isolation until tomorrow.  I was so scared about the shot but I haven't had any pain at all.  Hopefully, it isn't a delayed reaction but that I dodged that side effect

My hair is all but gone now...going to work tomorrow for the first time with a "chemo hat" on...

I read that taking Calcium supplement plus vitamin D could help with my white blood count.  Do any of you know that to be true?

Worst side effect = DRY nose!  I wouldn't have thought of that but it's terrible.  I've been using Vaseline inside it all day since I can't get out to the store to buy nasal gel (they make that...my pharmacist friend told me)!

Next chemo is Dec. 23rd - that'll be #3 for me out of 4 this first go round!  How long do they wait for surgery once final chemo is done?

Hi Ladies...I'm usually on the August and September boards but I check in here every once in a while to see how you doing and to see if I can provide anthing useful.

My experience on AC was that the SE's don't necessarily get worse with each TX...they just last longer.  Especially the fatigue..I went from 1/2 a day on the sofa on TX1 to most of four days on TX4.

For those of you with nausea...talk to your Onc about more/better meds or a more effective schedule for the meds!   I had Emend, Zofran, Compazine and Ativan.  I used them all exactly as prescribed and never had a problem. I think the Emend is really important because it keeps the nausea from starting.  It is shockingly expensive but I only took three per cycle...one at the TX and one the morning of Day 2 and Day 3. I also found that around Day 5 I didn't need anti-nausea drugs anymore,  an OTC Pepcid worked better if my stomach didn't feel right.  So you might experiment with that.

The hair "fall" is depressing, but inevitable.  You do get used to it (well, sort of!) and so does everyone one around you...so hang in there.  OH!   One thing left off the chemo shopping list at the head of these boards....DRANO!   My shower drain got completely blocked in three days!

Be strong ladies!

Patty

Littlebird ~ anything new?  when can you go home?  I hope soon.  Glad it was not H1N1 but wish you knew what had you feeling so sick.  Maybe just the regular old flu.  Thinking of you.

Mabelle~ glad your hair hurdle has been jumped.  Glad you had some fun with it with the kids.  I did the same thing when we buzzed mine off.  I will tell you almost all of my stubble has fallen out since TX#3.  I am looking like a skin head. 

Melinda ~ I agree with you, the old people will probably be scared.  I know my mom can't take it when I go au natural' just around the house when she is over.  Don't work too hard today.

Feistyblue, glad to hear from you. 

Cafelovr ~ I so agree with your whole last paragraph.  I cannot wait till Spring to feel the warmth of the sun, have some hair growing, and have chemo behind me..... WE will all be there TOGETHER!

I hope everyone has a good day.  I think of you all each day ~

HUGS !

Alicia

My husband takes the packing tape to me every few days...I think he likes it a little bit to much.  I hate stubble, but I don't want to shave and get razor burn..

Michele

For what it's worth, I've had my 3rd TX, today is day 5, and the SE's are no worse for me.  As matter of fact, they are following the calendar almost exactly, give or take a day.

Today is day 4, post Neulasta injection, and so far, so good.  The Neupogen shots took 8 days for the discomfort to set in, so it's prob. still early.  Am hoping for the best, but still go to bed each night with my Perocette and water next to me, just in case.

I shaved my head before any TX, so I've had stubble for weeks.  I sleep on a satin pillow case to keep from sticking to the regular one.  I use a lint roller on the head stubble and that takes care of it. I've lost, and continue to lose, the stubble, but still have enough to look like I would have hair if it were longer.  Prob. just wishful thinking.  Son and hubby are fine with the "uncovered" head, but I usually keep a do-rag on for some warmth.  (It's snowing here in Northern VA with 4" so far!!!)

I can't imagine all the pain and hurt some Warriors are having to endure with loss, illness, and unknown family health issues...on top of the SE's.  You are, all, in my prayers.  Nette

Melinda41- My new wig is a close to my real hair as I could get, both colour & style.

Well as yesterday progressed my sore head, changed to a quite painful head. I couldn't bear to have anything touch it. I brushed my fingers through my hair and it shed everywhere. My DH was away so my next door neighbour's husband did the buzz cut for me. We have lived next door for over 35 years. My DH was a barber so I had all the equipment.

 I still couln't bear to lean on anything so I got under the shower and shaved off (very carefully) what was left. I am soft as a baby's bottom and had no trouble with the pillows last night.

Today sore head is gone and I went out to lunch with a girlfriend wearing my new wig.

Wishing everyone minimal SE's today

Sherri: I have psoriasis (which chemo is clearing up, yeah!) but my dermotologist gave me a tub of Cetaphil brand moisturizer, it is a pretty thick cream. I have seen Cetaphil products at drug store and large groceries. We also use pure shea butter on our chapped lips, maybe that would help. Maybe this is too weird, but Crisco is also a good moistuizer for psorasis patients, if you get real dry and painful, that might be worth a try.

Linda; that stinks! have you ever had diverticulitis before, doesn't seem fair to get new problems right now. Is this something you are going to always watch out for or is it just something that happened due to the low white blood cell count. Hope you get better real fast.

Nette: Thanks for reminding me about the satin pillow case, I dug one out and used it, it was more comfortable on the pricklies.

KayH: glad you are all baby bottom soft! I am too scared to try and shave my stubble on my head by myself.

Isn't is funny... who would have thought six months ago that we would have been discussing painter's tape vs. lint rollers for removing pricklies from out balding heads. I don't know how long you all have been on this cancer train, but six months ago I had no knowledge of toxic pee and didn't even own one hat, much less a basketful to match anything I own.

I went to work with my little doorag thing on, people got quiet when I walked in, anyone who didn't know I have cancer, well the jig is up now.

Cheap Hat Tip: If you have "Dollar Tree" or one of those Anything is a Dollar stores near you, I have picked up lots of warm hats in all kinds of colors and they are 1.00 each. I also found a place called Rad Wrapz, I think it is Radwrapz.com and they have presewn doo rags in all kinds of patterns for about $5.00 each. They have a buy 3 get one free sale.

I want to play hookey from chemo tomorrow, I don't want to feel bad again. Been there, done that, got the bald head, let's move on to something else. But my sister is going to hang out with me on my bad days, doing the single mom thing is tough when I feel like I can't take care of my responsibilities.

Hope everyone has a great day!

Linda ~ so sorry about your infection.  As if this all is not enough to endure ! grrr...  Hope the medicine helps and clears it up quickly.  Definately NO more SLIMFAST ~ have you drank it recently?  Hope that isn't what caused it.

Melinda ~ I don't blame you for wanting to play hookey from chemo ~ BUT it's not an option.  WE need to make sure will kill any of those renegade little monsters. 

I too have said this week being my SE's were so bad, I"M DONE WITH CHEMO.  Then I shake myself off and say 5 freaking more.  I don't know how I'll do it ~ but I WILL. 

Good day girls.

Alicia