April/May 2012 Chemo hang out

rgina

Husker - same for me, when I say bills I mean the EOB's but when I looked at those, what was billed, what insurance allowed, what insurance paid and what I owed and what I had pre-paid since hospital collects prior too, I had overpaid. 

Gemmie

This thread is so active, it's tough to keep up. But keep it coming, ladies. I enjoy reading all of them!

And thanks for the feedback on the eyesight. Today mine seems better, as well as less foggy brain. I still am struggling to stay with a book, however. I've always been an avid reader so that pretty much sucks!

dancetrancer

Thanks everyone for the well-wishes - I actually had a great night of sleep!  DH and I layed down and listened to three of those guided imagery soundtracks (posted by nofear, I think? THANKS!)...knocked us both (esp. DH) right out!  So cool - listened to the heart one, one on immunity, and the sleep one.  Followed by a sleeping pill and it was goodnight Irene, er DT!  

Here's the link again for anyone who missed it the first time - highly, highly recommend it for stress management/'roid rage, LOL:  https://members.kaiserpermanente.org/redirects/listen/ 

 vjm - YAY!!!!!  So glad your onc held the cyclo to protect the heart and from the scary allergic reaction...not a risk I would want to take again, for sure!!!  I bet this last round of SE's for you will be much more manageable...hoping for sure anyways!  We are done girl, minus the SE's...and we GOT that!  yahoo my chemo sista!!!  

Pauletta!!!  I actually was worried it could be a clot...but didn't want to freak you out.  Holy crap!  I am SO, SO glad you are doing better - so scary!   Wow!  So happy all has turned out well!  And yay for your son!  Sounds like a wonderful adventure!

rgina - glad the Restoril worked for you - it has been a godsend for me!  I am always able to wean off it for week 3, so I'm not too worried about getting "addicted" to sleeping pills (which is why I resisted them the 1st round).  Had to laugh about the 18# cat on your head!!!!  My itty bitty 10# cat can feel like an 18# cat once she parks herself on me and refuses to budge, LOL!  

Gemmie - I do think chemo can affect vision - well, I've heard the dex can actually cause cataracts (rare) and so does Tamox...heck the chemo can also cause dry eye and watering which can affect vision - so yeah, I'd say it's all possible.  It might be just as well a good time to get an eye check, to see what's going on, if anything - but hold off on new glasses until you get through chemo?  I dunno.  Eye doc should have some better guidance.

As a side note, which may be helpful to others, I have scheduled an appt with an opthamologist for a baseline eye exam BEFORE I start Tamoxifen, and with my oby/gyn BEFORE Tamox (for baseline transvaginal US) - all suggestions from other seasoned board members ahead of me.  I made the appts for week 4 post last chemo, as most onc's start Tamox 4 to 6 weeks post chemo, from what I hear (unless you are getting rads first).  

vballmom - oucho on the nails!!!  That does not sound fun or comfortable at all. :-(   Hugs to you!!!  

Wow, yeah, the bills are insane.  My 2 day hospital stay for the collapsed lung I developed from them nicking my lung during port insertion (rare complication, so don't worry if you haven't had your surgery yet!) was billed as around $40,000.  The contracted rate - what the hospital actually got - was only around $2800!!!  Can you believe that??????  That is INSANE.   

LisaG65

i was scheduled for 6 rounds neuoadjuvant TCH, i have had 4. I am getting shots of neupogen. the neuropathy has gotten so bad, the muscle wasting, my gait, and just being able to walk across the room and not feel like a 99 yr old woman. i asked for new imaging, i have a mammo and ultra sound sched. for 6/21. chemo #5 is 6/26 but, i am not going to take it. i will see my dr on that day to get the results of my imaging. i am hoping for a masectomy as soon as i can get it scheduled. my tumors that were visible through my skin, are no longer visible. i am not taking the last 2 rounds of chemo. its just to much poison, i feel when i go to my dr.s office that its like being at a production line, or auto dealership waiting room. what wrong with your car? oh, i need a new car, you? oh, my brakes are bad. my dr has great bed side manner, i just feel its all about the $. and there is no room for natural healing. i went in as a hippie chic, with long dreadlocks, eating well, and taking supplents. the chemo is killing me, IMO.  i have lost all my physical strenght. it is scary to me, i am a personal trainer, weight trained, have danced and am/was physically as strong as any man. but to not be able to move my own body weight across the room has become to much for me to bear, and reading that some of these side effects never go away was enough for me to say hey, your going to take my entire breast regardless, so get it done! i am feeling better since making this decision. i dont believe in the poison. after hearing about robin roberts this week, doing research for months, i say enough already. i am scheduled for the rest of the year for herceptin and then 5 yrs of the pill. i dont think i will be doing any of that. all my pet/cat/mri shows no cancer in any other part of my body except my left breast.. i hear chemo also cause you to get cancer in other parts of ur body. i am going to detox my body and hope to regain my strength enough to  start walking, and exercising again, i am 47, i am of strong mind, i do have a say in my treatment, and will not be lured in to the cycle of the what the dr says is always right. i know my body and it has had enough. i thank you all for reading this and possible replies. i am smiling and focused on getting over the poison, surgery and getting my life back.

kjiberty

LisaG:  Congrats on taking control of your life!  I didn't start off in the great physical shape you are, but I am so tired and feel so weak.  I have one treatment (out of 4 left).  If the doc said 6, I wouldn't do it.  Your pic looks great, btw.  I will just need 5 years of a wonderful estrogen blocker, but my friend was on 8 months and has the brittle bones of an 88 year old woman.  I am very,very nervous about it. I don't know which drug she will put me on yet, as I am postmenopausal. (57 in September).

Dance:  Glad you had a decent night's sleep.

Regina:  I hear ya about about the EOB's.  Thank God I met my MOOP (max out of pocket) mid-February.  I paid my last bill last week.  "Free" sailing for the rest of the year.  It makes me sick how much these providers charge and how much the contracted amount is.  I feel sorry for the people who don't have insurance and get billed for the entire amount.  Talk about a racket. 

dancetrancer

Lisa - so sorry to hear about your terrible symptoms - the neuropathy was my worst fear with TCH.  I've had intermittent tingling in my hands, feet, and face, but, knock on wood, it has remained intermittent.  I hope it stays that way and then GOES AWAY. I'm hoping the B6 and Acetyl-L-carnitine have spared me worse symptoms.  

Chemo for sure is rough - it's a shotgun approach and hits all fast replicating cells, not just the cancer cells.  All along my path I have been trying to weigh the risks of treatment vs. the risks of my cancer recurring.  I too chose to do 4 TCH's vs. 6, but my tumor is a tiny HER2+ tumor, so that choice was a bit easier for me to make.  Once you have your MX and node biopsy you will have more information about the size of your tumor and if you have any nodal involvement.  I know you aren't asking for advice...but I'm gonna give it anyways...please look further into Herceptin before tossing it to the curb.  HER2+ cancer is extremely aggressive, and has a high metastatic recurrence rate.  Herceptin has been a game changer and the prognosis for HER2+ patients is SO much better since it was discovered.  It definitely has it's risks, of course (heart), but most who have done a year of it say they have tolerated it very well.  

PET scans do not show microscopic cancer cells that can later grow into a metastatic recurrence.  

Yes chemo can cause other cancers.  I'm petrified of that, too, esp. after the Robin Roberts story came out.  I so wish we didn't all have to make these horrible choices.  Which risk is the worst?  Constantly weighing it back and forth.  I don't blame you for not wanting to do any more treatment at all.  Not at all.  I just want to make sure you really truly understand HER2+ cancer and how it has a tendency to spread metastatically, especially in the first 5 years after diagnosis.  Once you get METS, it is incurable.  That's the cold, hard truth.  I am sorry you are suffering so and hope you feel better and get stronger soon!!! 

silkuk52

1st chemo was last fri a week ago-got the neulasta shot for the bone pain. Had extreme Nassau for 5 days. Better now but the bone pain became I.tense today. Been taking Claritan. GUESS its not working anymore. Any suggestions?

Melrosemelrose

silkuk- sorry to hear that you've had a tough time. As for the bone pain from the Neulasta shot,  you may try taking Tylenol or Advil to help with the pain.  You can alternate taking one dose of Tylenol and then after 4-6 hours take Advil.  If you had nausea for 5 days, any Claritin you may have taken those 5 days may not have stayed in you long enough to work.  You may want to talk to your onco about that nausea and what you may should do differently for the next round.  Perhaps your anti-nausea meds weren't enough.  You may want to eat 5-6 small meals the next round so you can keep something in the tummy.  Meds on an empty stomach can also cause the nausea.  Hope you feel better pronto!!!

kjiberty

Silkuk:  My MO says NOT to take advil or aleve, just to take extra strength tylenol.  Don't know why...

Melrosemelrose

Yep... I'd wondered about the Advil myself.... My onco told me to take either Tylenol or Advil.  I usually take the Tylenol.  I know that each work differently on the body.  I know there is some reason I don't take the Advil because of something I read somewhere but can't remember what I read. 

Fierro6

I need to thank all of my new friends here for talking about "the crash" all the time, or I'd be worried to death today.  "Did anyone get the license of number on that truck that hit me?"  I got my hair cut and got home, saw DD off to work, and that's the last thing I remember.  I just woke up, 5 hours later, with limbs that feel like spaghetti.  

Thanks to you all, I planned for it, and made arrangements to not be needed for anything this weekend.  I hope I'm better tomorrow.  From now on, my schedule will be a day later, so this will happen Sundays.  I can't wait to see if I'm going to make it to work on the Mondays after treatment.

I'm very thankful to have not been sick to my stomach yet.  I just wish something sounded good when I feel hungry.  I've never forced down so many crackers in my life.  LOL  Goodnight. 

mistym

Hi,

My MO has said no ibuprofen or aspirin containing meds because they can thin out the blood and with the chemo, the blood is already being thinned.  Tylenol only allwed.

Hugs

Misty

dancetrancer

I know with Carboplatin, you are supposed to avoid NSAIDS, b/c carbo thins the blood, and so do NSAIDS like Aleve and aspirin. 

dancetrancer

Fierro - glad you were prepared for it.  I'm crashing today, too.  Took a bath, was so tired I had to lay down before I could do anything else.  Moping around today, in bed on the computer right now.  Some indigestion.  Can't wait for the next 2 or 3 days to be over!!! 

Melrosemelrose

mistym & dancetrancer - Thanks for help with the Advil reason.  I knew I had a reason why I quit taking Advil but couldnt' find it my info overloaded brain!!!!

dancetrancer & fierro - Enjoy your lounge time while you recover from the crash and recent rounds of chemo.  Hope you feel better soon!!! 

Stacie

Gimmie- I was seeing blury until I took off my transition lenses and realized my distance vision was "better". My MO said not to renew my prescription until after chemo due to the potential of additional changes. I bought readers and go w/o glasses for distance-1st time in years.



Husker- I paid $3300 for an insurance denied BRCA Genetic test. ouch! My MO suggested it under sge 50 (I am 49) and insurance said 45.

vickilind61

This thread is getting so busy!  Love it. 

Approaching 24 hours since first tx and still feeling pretty good.  Wow.  I am tired though.  Had a big burst of energy when I woke up and got a lot done, but since about 12:30, been kicking back and resting.  My eyes just feel heavy and dry.  But, so far that is it.  Took some compazine this morning and will take some more now. 

I am fighting another headache, but that has been one of my only health issues for the last several years.  Will take some tylenol.  Go for my Neulasta shot tomorrow morning. 

kjiberty

melrosemelrose:  I loved your response

Dancetrancer and Fierro:  We love "crash" talking.  That's what makes this thread so great.  We all can relate! 

Vicki:  Hope you're feeling better soon!

I actually ran a few errands this morning, came home rested and spent 2 1/2 hours sitting at a restaurant catching up with a friend who's DH had leukemia, including two bone marrow transplants.  It's nice to talk to someone who can relate to what I am going through.  That's also why this thread is so wonderful because seriously, no one can relate to what we're going through unless they have gone through it themselves.   

Melrosemelrose

kjliberty- I think I'm going to start telling people that my brain is on "info overload" or "sensory overload" rather than blame the chemo for forgetting things.  For some reason, it just sounds better..... lol.

vickilind61

kjiberty, I agree whole-heartedly.  I am thankful in a weird way because my best support is my sister who is three years BC free!  She has been where I am at.  We are experiencing the ugliest side of cancer as my aunt, who is 81, is actively dying.  She had her first (seriously!) colonoscopy in Feb and they found cancer in the colon and kidneys.  The tumor on her kidney is as large as the kidney and is spreading to the lungs and spine.  She has opted for palliative care, so we are looking at months at the most.  We've gone up to see her three times already.  Her decline is visible each time.  Yet she is at peace with her decision and makes it a point to tell ME to fight and beat this BC!  How amazing is that!?

melrose, I struggle with saying anything about my memory since it has been bad for years!  But, chemo brain will be my go-to response from now on.  It works for me.

lsharvey822

On the steroid conversation (sorry I haven't been on here!) - I asked early on that they limit my steroids etc as much as possible since I know I tend to overreact to that type of thing so I've only gotten it during chemo.  No pills before/after.  I'm on TC tho not AC.  I'm heading to round 3 Thursday and so far so good.  O and my first doc didn't give me Benadryl during the first chemo either.   2nd doc at tx #2 did.

lsharvey822

o and Doc 1 didn't mention not to take Advil so I continued to.  I bruise easily anyhow (redhead) but I was bruising like crazy (someone's dog happily jumped past me on the beach and bruised half my leg!).  When I asked they said chemo can lower your platelets so avoid Advil etc because that can too.

Stacie

At the Drive In watching "Rock of Ages" with my kids and grands. For all of you from my era (49), I recommend it.

Gemmie

Fierro an Dancetrance:

What day(s) post chemo is  your "crash" happening?

And what is your crash like? Just fatigue or other SE's?

Vickilnn, am on day 4 and still not too bad. A few things: tossing and turing for 3 hours before sleep, a knot in tummy overnight and lots of indigestion / acid reflux overnight. That might have something to do with some poor choices for dinner last night, however.

Thanks for all the discussion about Advil, Tylenol, Aleve, ladies. I've been taking Aleve and Claritin for 3 days and even asked m onco nurse about it when I went in Thursday for the Neulasta Shot. She gave me OK to use Aleve, but I'm switching over to Tylenol!!

Fierro6

Gemmie - I am only on my first cycle, so we'll see.  However, for this time, I had the steroids in my IV and then orally on days 2, 3, and 4.  On day 5, (yesterday,) what I experienced was "spaghetti limbs" as I called it, overwhelming exhaustion, and even more emotional-feeling than ON the steroids.  I also had trouble finishing sentences.  

I couldn't find the words I wanted and the family would have to help me.  At one point, (when he knew I was in a joking mood,) DH said, "It's like talking to someone during their first tequila drunk."  Gee, honey, thanks.  LOL  I still didn't sleep like my old self last night, but it was better than I have had since Monday, and I feel a bit more like myself this morning, although still a bit "off."  It could just be the coffee that is fighting the fuzz, but for now, something is making me coherent.

dancetrancer

Gemmie - my 4th TCH was Wednesday - the "crash" started yesterday morning (day 3 post chemo) for me. I just felt completely exhausted, would rest, it would pass some, then it would happen repeatedly again at various times throughout the day.  My worst days in terms of side effects tend to be days 3 - 7, with the worst of the worst days 5 to 6.   My worst symptoms have always been ear ringing, big C or big D, stomach cramps, and the dreaded severe heart burn (I have maxed out all meds for this in the past - I have pre-existing reflux so the deck was stacked against me on this one).  Not to mention hot flashes/cold flashes b/c I've been put into chemopause...uggh!  Oh and yes on days 1 and 2 more of the steroid "rage" feeling than ever before - which I will describe as extremeley distractible, anxious, snapping off the handle easily at poor DH (who is only trying to help), jittery, and also like Fierro - trouble finishing sentences/thoughts (grrrr!!!).  This was worst this 4th round than previous rounds - I think my tolerance for feeling ill/chemo has gone WAY down.  So jittery days 1 and 2, then crash and exhausted starting day 3 with additional symptoms (as noted above) developing day 3. In the past those SE's have continued through days 6, well, sometimes longer...very variable.  I hope this helps.  I have a general pattern, it seems, but it's not exactly the same each time.  

I'm feeling a bit better this morning, day 4 - more coherent.  Got a good night's sleep with a sleeping pill and relaxation tape - YAY.  We'll see what today brings.   I don't know how many times I've wished someone could just put me in a coma for days 3 to 7 after chemo...wake me up when it's over!  LOL

Gemmie

Thanks, Dancetrance.

You're actually on same days cycle as I. My tx was Wed. also. I also think you are younger than I. I was well into menopause at the start of this, and I do think that factors in.  As this is my first cycle, am just trying to factor it all in to sort of know what to expect. This one hasn't been too, too bad, but of course not normal either, and I want NORMAL back!  The worst for me has been the acid reflux. Gotta talk to the doc about what she can do for me there.

  I'm led to understand that as the tx's go along, the SE's may become progressively worse as the chemicals continue to build up in our bodies.  Is that a correct assumption?  Great--it only gets worse. . . .

Hat's off to all you strong ladies out there doing battle! God bless us all.

mt4ever

Dance my schedule seems to be be close to yours in how the chemo affects me!  I totally understand about the steroid rage and try to stay away from the kids and hubby as much as possible.  My crash days are also around days 3-5 where (this was my 4th treatment) I felt very fatigued, more so than usual, and I also swing from C to D!  Hate it, hate it, hate it!!  I have not had the ear ringing but have had the eye twitching and a little numbness in my fingers and toes.  Hope it does not get any worse!! 

Hang in there Gemmie, Fierro6 and the others that are coming behind! 

Stacie I so want to see that movie! Would LOVE to see it at a drive in!!  Awesome!!! 

Fierro6

Gemmie - I was talking to my mom, not long after my diagnosis, and I got a bit weepy.  I told her "I just want 'normal' back."  She said, "This IS your normal, now.  And there will be many more normals before your life is done.  Make the most of each 'normal' as it comes along."  

That helped me more than you can imagine.  My 'normal' right now consists of only having one breast, trying to get a TE fill before chemo if my blood work allows because that way it's all one day and I won't miss as much work....blah blah blah.  It means preparing to lose my hair, making my teen daughters comfortable and prepared for everything that's going to happen, often sleeping in the recliner and feeling overwhelming guilt for stealing this summer from my family.

Finally, my current "normal" includes finding this place.  This wonderful place full of advice, support, and strong shoulders.  People who had me prepared for yesterday, so I could prepare my family, so my husband didn't think I was drunk.   

dancetrancer

Gemmie - I think you are right - adding those hot flashes and who knows what other emotional drama the change in hormones is doing surely didn't help my mental status when I was 'roiding, LOL!!!   Instant menopause + chemo side effects is just plain cruel and unusual punishment!  Oh well, this too shall pass.

Definitely talk to the doc about the reflux - it is absolutely my worst sx and most women on here can relate to how awful it can make you feel.  Most women here can get it well controlled with a prescription level proton-pump inhibitor like Protonix or Prevacid or Nexium.  If that isn't enough to control it, just ask away.  I've got a whole pharmacy full of recommendations for you, I've been through the gamit.  

As far as the side effects getting worse - it's a tough call.  See, on your first round or two, you figure out what is going to happen for your SE's - and hopefully you discover what meds, routine, etc. work to manage those SE's best.  My first round was the worst for fatigue, stomach cramps, and Big C and Big D - somewhat better next rounds because of neupogen, probiotics, knowing when to take Miralax as needed, and knowing to take magnesium for stomach cramps.  3rd round was absolute worst for heart burn (so far) - poor esophagus just getting beat down majorly - almost totally quit chemo then (I'm sure all remember my woeful post at that time!!!).  4th round jury is still out.  I think in general the fatigue tends to get worse as you go on, for most, and just in general your tolerance goes down - just gets tougher to stay strong.  But strong we must stay, to get through it.  We do it together!!! 

mt4ever - that C to D sucks, doesn't it?  I've been on the C train since day 1, using Miralax every night - giving me some relief, thank goodness - but still not normal yet!  I think I prefer the D over the C - at least it gets out.  Now how pitiful is that to have a preference in GI discomfort?  LOL LOL LOL  You know you've had sx too long when you are wishing for big D.  I get occasional eye twitching - usually week 3, it seems, associated with eye watering - then it passes.  Many women on the TCH thread say they had it for weeks.  I also have that intermittent tingling and am hoping it is temporary.  I'm just glad I don't have the bloody nose thing from the Tax - I freak out with bloody noses, always have.  

Fierro - you are handling this like a pro girl.  Keep on keepin' on.  Soon this will be a MEMORY for all of us!