Starting Chemo in September?? where are you ladies

Karyll is still feeling pretty good thank you,I am getting a bit more tired.. the burning is still there when I swallow or drink or eat.. but is not just incessantly rising.. I think that has probably been due to the steroid. But here is one I have not read about yet... Last night as I was inspecting my mouth for redness, sores etc... I noticed this big black hairy tongue in my mouth instead of the normal thing, it cleans off, but feels weird, and all my food has taken a flavor of aspartame. Everything tastes artificially sweetened. hmmmmmm..Which is okay I guess but aspartame french fries did not cut it for me today... lol

I have taken last dose of prescribed meds now (zofran, dexamethasone) but have the as needed anti nauseants, ativan and still of course my back problem pills - muscle relaxants. But I am surely feeling weaker this evening. Perhaps I tried to do too much today. My ex sis in law is coming over with the "The Wig" tonight... to make sure she has shaped it and all that fun stuff nicely!!

All in all? I think I am doing okay. Better than I anticipated perhaps. I DO know I will get tireder and tireder but I guess I will just have to live through that... lol.. and sleeeeppppppppppp.. Hopefully I will follow a pattern in that regard, so I can keep working mostly full time.

Best wishes everyone, and cheers!!!

Karyll

Paxton,

I refused all steriods for my AC treatment. You can do that, you know. I had experience with steriods at other times in my life and I knew they wouldn't be good for me. I only had Zofran in addition to my AC. So think about it for the first one- you can always add it in the next time. Or do it once, and refuse it later if it makes you have additional SEs.  I am happy I refused because I never had sleeping issues, which is really important to me.

Good luck!

MJ -- thanks for the info on the fatigue. I'm kinda getting a little nervous for 2 nd comming up.

Urbie--- I just wanted to know it sounds like you just had an IV put in for the  chemo...they took my line out and I don't want one put back in as I only have 3 more to go.So I was hoping I could just go ahead with a IV and no port or picc line. Glad to hear you are still doing good.

Paxton--- hang in there, day by day hopefully things will settle down soon or least be managable for you. 

Aylnn---I'm glad you posted about the not sleeping...I to am not sleeping the greatest, so I look forward to a reply to your post.

Hope everyone else is doing good...take care *hugs*

Janice 

Hey everyone,

Trigeek- So sorry to hear you've been sick.  I think the Zantac will be important for you, because they told me the chemo gives you really bad heartburn,especially I you're prone to that anyway, which I am. I got brave (or stupid) one night and had spaghetti and was up until 1 am with acid reflux and pain!  Maybe the Emend will be just your ticket to relief. They asked me about the morning sickness too and I had none, but they have held nothing back as far as anti-nausea meds and steroids in my IV.  Not sure why your onc. nurse would discourage the Ativan-- mine told me that it is also an anti-nausea med and would help me relax and sleep.  Maybe you should at least try it in a low dose.  It works better for me than Xanax.  I have been taking a very low dose Ativan for about a year now, and someone said that my lack of nausea could be due to having the Ativan in my system already.  Hope some of this helps!  Take care and hope you feel better soon!

Urbie, good luck with the Neulasta shot-- I have mine tomorrow in my left arm.  Every cancer center is different-- we sure don't have massages at mine!  Sounds very nice! You're lucky you have no aggravating port.  Hope you continue to do well!

Hi Laurie, sorry to hear you've had a rough time of it.  I hope you feel better very soon.  I did have some throbbing pain in my back, neck,and hips, but it finally settled in my left knee and I could hardly walk!  I go for my 2nd Neulasta today,and hopefuly it won't be as bad or at least no worse. The chemo nurse told me I could take Aleve for just a day or two, then go back to Tylenol, and that really helped me a lot.  I feel fine after my second chemo yesterday, but who knows-- that could change in a flash.

Janice, I hope your next tx goes well.  And hopefully you can find a solution and get some good sleep really soon.  I woke up many times last night, but I think it's those steroids.  The last time it was temporary though.

Paxton, I hope you're doing well and taking care of yourself so you can get geared up for that hunting trip!  I'm so excited for you and please post more pictures for us.  Are you able to eat more today?

My hubby buzzed off my hair last night and it truly feels so much better!  No more worry about if it's going to fall out in clumps at my desk, and it sure was turning loose Sunday and yesterday.  He did a great job, but he did it with tears in his eyes-- and that was hard. I did not cry one bit though since I knew how stressed he was.  But we made it through!  He's my rock and my precious soul mate.

I also had a wonderful discussion with the nurse practitioner who I usually see and I expressed my concern about my doctor's reluctance to give me encouragement for a good prognosis and survival rate. Well, she knows my doctor very well and while being very professional, she did not hesitate talking to me and explaining all the stats pertaining to my individual situation, even showing me the graph run for my special chart.  She was truly wonderful and so encouraging and uplifting!!! If only I could have talked to her two months ago, I would'nt have felt so down about this HER2postive thing.  She explained all about the PR/ER neg and the advantages to that and the great success with Herceptin.  She explained that the chances of my 10 year survival was almost 100 Percent with the treatment they are giving me! What that woman did for my mental state can be measured in gold--tons of it!! 

Love and hugs to all!

Mary Jo 

MJ: congrats on your prognosis...that's awesome.  I'm trip neg and no one explained that to me to begin with so I thought when I came back neg for those tests it was a good thing.  And congrats on the hair.  It does feel better to get that icky hair off (at least mine was icky).  Now I have stubble and that's starting to fall out.  Its weird.  My scalp still hurts.  I'd like to use a razor to get down to the skin but I don't dare. 

Here's my hair fall and hat look

Hi everybody

Here is a little tip my nurse told me about mouthwash...instead of mixing baking soda....use club soda it has the same effect...it's been working for me and no mess, just keep bottle on the counter. 

I'm going to try next tx with just a normal IV...see how it goes, hopefully no issues and my veins hold up!

Paxton-- The new do looks great!

TTLY

Janice 

Hi Marietta, I'll be on Herceptin for a year also, starting with my second round of Chemo, Taxol x4 every 2 weeks in November. I just read some news articles on this website about how us Her2+ women will get a 52% reduction in reccurance by taking Herceptin. I'll take it!

Enjoy your ice cream

Urbie, they gave me the option of having Neulesta in the arm or stomach and I chose the arm, and it didn't hurt at all. Take it from me who cries at the thought of a shot.

I just went out today and picked up some sleeps caps and scarves to get ready for the day when my hair starts falling out. I picked out a wig several weeks ago so I'm ready!

good night all,

Rachel

My first chemo was last Thursday and I ended up in the hospital for 3 days, it was awful.  I had Aloxi and Decadron before, then AC.  Within 3 hours, I was so nauseated.  I had Compazine and took it every 4 hours.  By the next morning, I couldn't do anything, but lay in bed, started vomiting, etc...  They sent me to the ER, gave me Zofran and alternated with Compazine.  They admitted me, I was dehydrated, too.  I had clear liquids for 24 hours and worked my way up to soft foods. 

I was miserable and am anxious to see what they do the next time.  I haven't been that sick with nausea ever.  I am still going slow, came home Sunday night and am tired and working my way up to normal food.

I got the Neulesta shot and didn't appear to have a reaction unless the nausea masked it.  I ran a fever for part of my stay, but it went away.

Anything I should ask in particular on Thursday when I see my doc?  He was out of town, so I saw another onc.  My next chemo is 10/11.  I keep trying to stay positive, saying 12.5% done, but this is awful.

Nancy

Hi there,

Rachael I wonder what side effects will be like on Herceptin alone...does anyone know? I can't wait to be done with the carboplatin and taxotere....My onc prescribed me Nexium yesterday for this churning acid in my stomach and I still am being woken up by stomach cramps and diarhea (it's 4am here). 

Karyll I might get some club soda today, that actually sounds really good right now!

Nancy that sounds awful, 3 days in the hospital...I hope you're feeling better today. I had to stay in the hospital overnight with my first chemo. The biggest difference the second time was the Emend and also I took decadron a little longer this time.

Hi to Janice, Urbie, Laurie, Maryjo and Paxton... I hope you all are well today.

I'm going to try to go back to bed now....

Marietta 

Paxton, can you eat yogurt daily ( assuming your oncologist approves) I know dairy is a nono for diarrhea but because of the cultures I always eat yogurt when I have that problem since it restores the flora (or whatever ) of the intestinal lining.

Another idea is to  eat yogurt proactively to prevent diarrhea after your next tx. One little serving a day should do it ( assuming that the onc is ok with it ) go with the plain one.

I have been diluting my water with cranberry juice( proactively trying to ward off any UTI) and also soak 2-3 prunes in hot water at  night and drink the water and eat the prunes first thing in the morning - ward off constipation. 

Oh well at least that would be my action plan, but again I am infamous for making the docs/nurses angry with my incessant questions about not taking any meds, and treating symptoms with complimentary stuff.

Nancy my chemo twin !!! so sorry to hear that, I too got quite ill the same night. Aloxi just does not do zilch !!
I found out that my stomach was churning acid like crazy ( you would know if you are too when you throw up), so I started zantac and that helped the nausea A LOT ! - you might want to ask your onc about that if you also felt a lot of acid while you were throwing up. I also pop tums like candy.

Aylin

ok touche!

pax girl 1 - tri girl 0

Hi Nancy

I feel your pain! except thankfully I didn't have to go to the ER that first night. But it was awful and like you I'm counting down my treatments saying after tomorrow I'll be 25% done! I have to say that the streak of nausea and fatigue I felt afterwards did take away some of my positive energy but starting at day 6 I slowly felt better everyday. I hope you start feeling better soon. I called my doctor and asked what other drugs they can give me this 2nd time and hope that something else will do the trick. I had emend, then at home I had zofran, companzine and lorazapam. I was taking all of them! I think they will give me Aloxi this time.

I'm shaving off my hair in about an hour. It started coming out in handfuls this morning, in the shower, and all day.

Karyll I fought slight mouthsores starting around day 9 till yesterday. I swished with biotene mouthwash and baking soda/salt water mixture every chance I had. I think that kept them from getting worse, and now I'm ok.

Paxton I'm so sorry you are feeling so crappy so close to your next TX. Definately give your onc a call and see what they can suggest to help you recover. I lost almost 10 lbs since surgery 1 and chemo 1 and I don't have anything to spare. I've been making myself eat every 2 hours, lots of protein and fiber! that constipation kicked my butt, no pun intended.

Well tomorrow is TX #2 and again I'm hoping for the best. I might not be able to check back in with you ladies for several days.

Be strong! We can get through this,

Rachel

Hi Paxton ---

I just wanted you to know that I was thinking about you today and hope that today is the turning point for you in this round of treatment.  It is so hard at times to get through these silly side effects.

The rest of you ladies are in my thoughts as well.  I'm rebounding slower from this tx than my first one.  It is hard to maintain your life and go through chemo.

Best wishes,

Laurie

Hi Ladies, I have been keeping up on your posts, but haven't had much to say.  I hope you are all doing better.  Three days out from Tx one and feel tired and nauseated, but it won't kill me.  And now my period decides to show up!  Add that to the mix... I have a hard time imagining diarreah, I have the opposite problem and it is not good.   My daughter was home sick from school yesterday with a fever so we layed around most of the day and napped.  I am taking the anit-nausea drugs and they are making me tired and foggy brained.  I miss my coffee in the morning....