April 2011 chemo

Merilee

Hi gals

Sorry to  hear you are having a tough time. I was also very unsteady on my feet after each treatment. I had several falls so be careful! I found it helped to wear solid and side shoes. Also everything sounded muffled, but that has improved now. My trunk control is much improved as well. I am 2 weeks 4 days past my last treatment. Hang in there ladies. When all else fails take a lorizapam and go to sleep. That is what I did. And yes I was very disoriented and got very concerned about my brain at one point. Omega 3, & almonds are supposed to help with brain health.

Hugs to all who are still in chemo, my heart goes out to you.

sweetjolieblon

I started chemo 13th April 2011.  I just finished #5 of 6 the 6th of July.  One more to go-the 27th of July.  #5 kicked my butt big time.  I was not prepared for it.  My nausea was worse (no vomiting-they gave me a new med-Zofran but it didnt help much), I was extremely weak and unsteady on my feet feeling like I was going to faint when I got up.  For instance, I got up and pulled open a can of soup, dumped it into a bowl, and that was all the strength I had.  I had to lay down I felt so dizzy and bad.  (thank goodness for dear hubby) I felt like I was coming down with a flu from hell.  I understand chemo is cumulative but I was just not prepared for how bad I felt this time.  Today, Monday, 11th I feel like I have turned the corner.  I keep trying to focus on the idea that while chemo is kicking my butt it's kicking cancer cells.  What a ride!!!  Joan

Merilee

I'm glad you are feeling better Joan, hang in there. It really is a slow crawl through Hell.

profbee

Feel better, everyone!  Merilee, I look forward to your best seller!  LOL.  Truly, you could write a book--or a made-for-TV Oprah channel movie!  Ooooh...who would you want to play you?    I hope you're laughing along with me.  It's just so much for one person to have to go through.  I always say you can't compare one person's pain to another's, but man, you're a rock star for holding it together through all that.  

I'm on different meds than you guys (Taxol and Lapatinib), but I'm just majorly EXHAUSTED.  Yeah, the cumulative part!  I have to rest for a second after going up the stairs!  

I made it to the pool with hubby and the boy today.  It was really nice, but hubby got very sad--a few people we haven't seen in a long time asking me about the cancer, maybe thoughts of being there 2 years ago for Jack's swimming lessons when we were all healthy and happy.  I don't know.  I was trying so hard to get out and do something summery and fun even just for and hour or two.  sigh.  I love him so much, and I hate to see him so bummed out.  My son has said some bummer things lately too--the worst was when I put on my wig (which I really don't ever do), he said, "Mommy, when I see you like this it makes me stronger."  From a 5 year old!  Oy.  Here I think I'm pulling through and hiding it as much as I can.  

Anonymous

Merilee: Wow, I can't believe what you went through in that marriage!

Profbee: I'm totally exhausted too. I nap every single day, and when I don't, I am collapsing by 7 PM, unable to even get up off the couch.

What's the deal, gals? How the HELL did we wind up here???

profbee

Honestly!  How DID we get here?!  I just freaked myself out trolling on the boards...so many people on the Stage IV boards had such little tumors to start.  Because I haven't had surgery yet (with the neo-adjuvant chemo), no one will tell me anything about statistics or my likelihood of recurrence or mets.  I just don't understand how it can go from early stages to stage four so fast.  I guess no one knows, but I'm freaked nonetheless.  It's making me glad I'm at least going ahead with the BMX.  That should help, right?  sigh.  

 Windlass, 8pm is pretty much my five-year-old's bedtime AND my bedtime!  

Merilee

Thanks for the love and complements ladies, but I will tell you it has not been gracious LOL

My bed time is about 8 as well these days.

Funny you should mention a book, I am a published author but it is a children's book. I have been kicking around the idea of writing a book about my experiences and what I have learned from it. Maybe I can help someone else. 

I am headed to northern Michigan for a few days to enjoy the beach and some special time with my son. Got to do it between chemo and rads and there is only a small window. See you all in a few days, take care.

jackifp

Ditto, artiecat...what's with my eyes teary and twitchy and my ears under water, oh, yeah, and the heartburn and sheer exhaustion and...okay, this, too, shall pass, eh, my fellow fighters? Hang in there, all us, just like that old poster of the kitten hanging on to the tree limb by all claws.

Rowan47

Just spent last 30 minutes catching up on everyone's posts. You ladies are so awesome!!!! You make me laugh, cry and realise there is definately strength in numbers I have just finished AC x4 (gross!) and am due to start Taxol x 12 next week. Really not keen on more chemo or rads!!! Am seriously thinking of BMX and will discuss with onc next Monday. I am SICK of worrying over recurrence etc and feel pretty ok about BMX without recon. I agree with Profbee, that should help, right?????

jackifp

I've always been the night owl in the family, staying up later even than my teens did, for a few hours of total quiet (teaching 150 teens a day is loud work). Now, I'm down for the count by 9, except on the two decadron nights

geocachelinda

I had my first Taxol treatment yesterday.  Had a strange plasticy taste in my mouth and then my lower "chins" started feeling hot, I called over the nurse and she said I had a rash and turned off the Taxol.  She took my vitals which were good and the Dr looked at me and order more Benedryl.  So she gave me that and they restarted the treatment with no other problems.  Only thing with the Benedryl is that it made me very sedated.  I was still awake and concious of my surroundings but could not keep my eyes open!  Kind of like coming out of anesthesia.  I feel fine today except being a little tired and my toe nails hurt a little.  @Bernie Allen, my last A/C was horrid for me too, glad it is over with!

KiwiMum

Geocachelinda - I had my first Taxol yesterday too. No allergic reaction for me. I did start feeling sick about halfway through. I got home, walked in the door and promptly vomitted. I thought Taxol didn't cause nausea! Ater that one time I've felt completely fine, thank goodness.



I was also very tired from the Benedryl. I was asleep on the couch about an hour after getting home.



I'm happy to have started Taxol. One done, 11 to go. The countdown is on. I was asking my onc how quickly I could start rads at the end. I just want to get it over with! Also can't wait to get my port out - I hate it!

kg1234

Hey everyone,

I did Taxol #6 of 12 done yesterday.  So far, I'm feeling pretty good.  Look at my older post to see my "taxol" breakdown day-to-day for weekly treatment.  I know we don't all react the same, but I hope it helps someone.

I feel okay today, and have a fair bit of energy.  I never sleep well on Monday nights because of the steroid.

I can't wait to get my PICC line out too and get this all done.  My final date for taxol is August 23rd.  Yahoo!

Hang tight sisters,

KG

RangerMom

Hi All, I've been out of it since my Taxol #2 of 4, It really makes me hurt (after I get the neulasta shot) and so very tired. I got my surgical date: Monday Sept 12th, bil mx with nodes. I'm scared but excited too that I'm moving into the 2nd phase of this treatment. Some good news I found out is I wll only need rads on the one side with mets, the other side was stil in situ so it wont need anything further. No recon till 9 months after rads. Dr. says expect to be off 4-6 weeks. Can you tell me, those of you who had bil with nodes, how soon were you able to get back to work and did you start part time? I'm worried about the money!

geocachelinda

RangerMom I had to apply for SSD.  The severity of your cancer can count.  I also have other issues besided that so I qualified on my first try. 

I have started some tingling and soreness in my feet and hands from the Taxol.  Not unbearable.  Pretty tired too.  Seems like I've been flat out running these last few days.. Only one appt tomorrow with my primary care Dr.  

I put a bird bath out and there is a finch taking a bath!

kg1234

Geocache-

I take L-Glutamine and vitamin B6 for the neuropathy...I usually notice the tingling most on the 2nd -4th day after each treatment, but I take both supplements everyday.  Usually I put the L-Glutamine in my blueberry smoothie.  I have read some horrid posts of women on this site who still have neuropathy 2-10 years post their taxol treatments...I really don't want neuropathy to be something I have to deal with permanently.

Lots of ladies in the US also take acytyl-L carnite for neuropathy.  I can't get it here in Canada, but they are doing clinical trials of it for cancer patients.  

Cheers, KG

Anonymous

Ranger Mom: I had a unilateral mastectomy in February, and felt up to working about 2.5 to 3 weeks later. Bear in mind that I underwent surgery in a healthy body, though, not one that had been brutalized by chemo, so I'm not sure if I would snap back that quickly now.

By the way, we Stage III ladies automatically qualify for SSI if we have 10 or more positive lymph nodes. You certainly don't want to hope for that -- and I'll be praying that you have NO positive lymph nodes! But you may want to look into it and see if you qualify anyway.

Now that that lame creepazoid is out of your life, do you have other support systems to lean on after your surgery? This is the time to call in any favors, have friends fly in from other parts of the country, get your kids on board, do whatever it takes to get some help post surgery. You'll need it for that first week, especially.

RangerMom

Thanks All! Windlass - my sister, who is a RN, is coming up from GA with her husband to help me out the first week of surgery and after. Surgery is Monday, and they'll be leaving the next Sat. I'm hoping that will be enough. My daughter is living with me but she's very busy with college, working 12 hr shifts at the Cleveland Clinic and has a new boyfriend in her life. I also feel she's having trouble dealing with everything so not sure how much help she will be. I have a very old boyfriend who I know would help me out, we stayed friends, if I needed something really bad. I think I may ask him to watch my 2 big dogs the week after my sister leaves so I don't have to deal with them. i  think he would help with that. Is SSI and SSD short term disability? I do have that but it only pays 60% of my income and I'm the breadwinner here so finances are worrying me. I've got 3 weeks vacation saved for this surgery and I believe they use up my vaca first bfore the SSD kicks in. I know I am thankful for what I have, and I know I have to have faith that God will provide all that I need to make it through this. I do have 1 lymph involvement on MRI so until they do the surgery, they won't know for sure how many will show signs of previous cancer. I say previous, because I sure hope with all my heart that doing this chemo first is stopping the mets. My biggest lump is smaller the surgeon said last Friday when I saw her.  I don't think it will be gone though before the surgery. She is doing another MRI the week after my last chemo, that will tell us more. 

KiwiMum

RangerMom: I also had a unilateral mastectomy.  I had two full weeks off and was fine to return after that.  My drains came out after 4 days - that can make a difference to your mobility and comfort.

I agree with Windlass, I was completely healthy and chemo free when I had my surgery, so bounced back quite quickly.

The part that has taken the longest to recover from is the node dissection. I had all nodes removed and this severly impacted my movement. I am still seeing a lymphodema physiotherapist weekly to help with movement and cording.  I am now able to lift my arm straight above my head but it's still stiff and feels unnatural compared with the other arm.

RangerMom

I sure thank you all. I've said it before and I'll say again, I couldn't make it without you all. Sometimes I feel so lonely and coming on here makes me feel connected and cared about. We are all in the fight of our lives and we are each other's support network.

Teckler2

 I feel like an elephant stole my real legs in the middle of them night and gave me theirs! Has anyone has trouble with leg swelling?

Ranger Mom: I can understand the pressure of being the breaswinner. Have you checked with your cancer center to see about programs to help? There are so many organizations out there with funds to help for anything you might need while you are off from work regardless of  SSI or short term disability insurance. I got a lot of information from my cancer center's "nurse navigator". 

Hope that helps!

profbee

Okay, women.  I have a question.  My hair is growing.  You'd think this was a good thing.  I've still got 2 weeks of Taxol and Lapatinib left. Then, end of August is my surgery.  Then I'm going to start AC.  I look like a patchy, fuzzy duck.  I'm actually just considering shaving it until I lose it again from the AC.  I rock the bald look, and this is getting a little odd.  Thoughts?  I'm not sure what to do here.

CarlaB76

Profbee...I've been keeping mine shaved down until chemo is done.  I can't handle the peach fuzz.

Folks, what are you all doing for sleep?  Are you sleeping?  I've tried Ambien, Ambien CR, melatonin and I'm still up almost every night from 1-4, and since I'm working I don't really nap during the day M-F.  Sat and Sun think 2 naps a day.  Thoughts?

profbee

REally?  Thanks.  Okay, I don't feel like such an idiot for shaving my head.  I'm taking 2 Ativan to sleep.  I don't take it on nights my hubby works until 11 because I'm just afraid that I wouldn't be 100% if Jack needed me, and then it's kinda late when he gets home and I have to get up in the morning.  One Ativan didn't work at ALL for me though, so they upped me to two.  The melatonin didn't work at all either--for me at least.  

Teckler2

Ambien, Ambien cr, and the melatonin didnt work for me either- I take temazepam/restoril and that works wonders. It takes an hour to kick in, but then its off to lala land after that. 

Teckler2

Profbee- I kept shaving mine down until this last treatment. I didn't like the fuzzy duck on me

Sudzinvermont

Profbee~ I'm shaving off my fuzz too. Not all of my hair is growing, just the little bits here and there that didn't fall out...so letting it grow is not very attractive. Besides now that it's hot out I like to just go bald. I did go out last week with my head "glitter glued" in beautiful purple and pink glitter thanks to my kids, but no fuzz!

Ranger Mom~ I had uni mx and a reduction on the other breast at the same time with a sentinel node removal. I was ready to go back to work in 10 days or so...easy days, not full schedule. I had a bad node and had to go back for an auxilary node removal so I had to put returning off for another 10 days or so. But I was feeling good to go prior to that, so about 10 days to 2 weeks.

 Teckler2: If you find out who stole your legs let me know..could be the same person who took my feet and ankles this week. I'm blaming the hot weather. My herbalist made me some Dandelion tincture. It's a natural diuretic and seems to be working pretty well.

So, round 5.1 yesterday had put me off to round 5.2 for next week...arrgghhhhhhhh. My platelets are too low again so they only gave me a one week dose of herceptin, (second week in a row for this) and no Taxatore or Carbo.

Doc says it's the Carbo beating my bone marrow to the point it just isn't recovering. Long story short, he says we are going to drop the Carbo. He seems to think it's done it's job well enough and even reducing the dose at this point isn't worth it. So I go back next week and do another round of herceptin and the Taxatore...if my blood work looks better that is...then 3 weeks later my final round of Taxatore and Herceptin. I'm drinking a blood tonic from my herb ladies full of stuff to boost me up...I hope it works all these delays are making me cranky! 

I'll still have to finish my year of Herceptin and do my rads, but at least I can cross the chemo off the list.

Sorry this post is so long, you are all such prolific posters with so much to say. Don't know how i'd be surviving without you all.

Sue

geocachelinda

Wow, today I started with these random pains shooting all over my lower body from my lower back, abdomen and legs to feet.  No pattern to it, just comes and goes in waves all over.  going to go pick up a script for hydrocodone.  Hope it helps..  I had my first Taxol treatment Monday btw.

RangerMom

For sleeping I'm taking Restoril (my onc gave me a prescription for it). it works pretty good, only waking up now once or twice instead of staying up hours like you are doing. And if I do wake up, I'm able to go right back to sleep. Ativan wasn't doing it for me. Hope that helps.

RangerMom

Geocachelinda,

I've got those random pains too, the onc gave me this medicine for the neuropathy but it makes me so sleepy I can't take it till bedtime.