Chemo in May 2014

Day Four of Cycle 1/Treatment One THC Plus Pertuzumab.  My babies are home and it makes any SEs easier to deal with.  I am feeling for all the girls here that are experiencing the tough SEs and my thoughts an prayer are with you - Lespring // Debiann, Writing Help, Lakegirl....  

I remain guarded on saying my SEs are managing as this is my first of six Cycles and everyday may bring something new.  My husband gave me my shot and the mild bone pain has been managed with Extra Strength Tylenol and Aleve.  I am off all post-treatment meds, but had some Zofran left over from a previous episode of Vertigo so I decided to keep that going.  Since a head on collision back in the late 1990s I always had motion sickness/vertigo so the nausea has been an ongoing problem.  

The Decadron (steroid) made me super hungry and I am glad to have finished that on Day Two.  

Wishing all my fellow May 2014 newbies manageable SEs for those that are struggling, praying that changes for the next Cycle provides you some relief.  

Hugs and Kisses

Hi. I'm joining this group pretty late. My port is going to be placed on Wednesday the 28th and my first AC treatment will be on the 29th. 

I just turned 40 and have led a pretty healthy life. Never smoked, ate lots of fruits and vegetables. I was truly shocked to find a lump in my breast, and still more shocked when the biospy results came back as a high grade infiltrating ductal carcenoma. I have a really aggressive type of cancer and a CT scan after my mastectomy showed that there is still a little bit of cancer between the lobes of my lung. So, chemo is not optional for me. Its got to be just as aggressive as the cancer. 

I also have MS, which can complicate things. I'm on a MS medicine to reduce my white blood cells and don't know if neulasta is really a good idea for me, but my neurologist said its ok. 

Its been great reading about all of your experiences because your chemo experience does not sound nearly as bad as I feared. 

I am happy to say this has been a glorious weekend for me. The weather has been amazing and my energy level has been near normal. I'd say about 90%. My bone pain has been gone since Thursday night, and today, for the first time in 11 days, I have been able to not only eat, but keep the food in me! I expect by the time I go for a check up on Weds I will have gained back some of the 11 lbs I lost in the first 10 days. 

Feeling so good  now makes me think I can go ahead with another round on this protocol, we just need to make some adjustments. I need to go in for IV fluids every 2-3 days to keep my hydrated. I need to wrap my head around the bone pain. Its has me 100% debilitated for several days, but now I know it WILL go away, it just lasts a bit longer for me than everyone expected. And is severe. 

Please, when I'm in the middle of the next round crying that I can't go through this hell again, that I said just the opposite today. ;-)

Hey Lespring - good to hear!!! hope the rest of your days are even better than  this weekend and like Debriann says - next time maybe be totally different.  I got my neulasta shot in the stomach this time instead of the arm - I think Debiann suggested that it might reduce the bone pain  - my nurses didn't think it would but went ahead and gave it to me there because I asked - I think it does - or like we have already said - it is different everytime - I have less bone pain this go round so thanks debiann.

Timbuktu - i think there are a few choices on the type of chemo to prescribed - and I think the MO makes a judgement based on their personal experience - otherwise it makes no sense - maybe if you had an oncotype done - that plays into it also - I didn't.  My intitial plan was to have Adriamycian, Cytoxan DD for 4 - then to go onto Taxol and Herceptin.  Based on my diagnosis I thought that was intensive and got a second opinion and the other MO thought that same as me - that there was no reason to go that route with my diagnosis. My first MO had agreed prior to the second opinion to go with what the other MO suggested as he knew that the place that I was getting the 2nd from was cutting edge on current treatment.  That is how I ended up with what I did.  I think alot of it reflects what "school" of medicine" they follow also. 

HI couture911 and welcome.  I hope your treatments go easy and that your neurologist and MO coordinated your treatments to help with the complications of the MS.  You might want to search or start a thread about having MS and going through chemo - there may be someone here who has gone through it and can give you some tips.

Day 6 for me - feeling pretty good - just a touch of D and maybe a bit of a UTI - will keep an eye on it and let my MO know tomorrow when I go in for blood work.     Energy level is coming up again - days 3-5 are my bad days for the last two treatments - then I get like a second round on days 10-12 - mostly joint and muscle pain - but doable.  

Hope everyone has a SE free day today.

Day 6 for me too. I think I may be on the upswing. Although the downswing wasn't too bad. My MO said stop Claritin after 3 days.  I didn't go 24 hours past my last dose before I decided to veto her (with the helpline nurse's blessing).

 Anything that you can put the word ache behind I seemed to have - headache, toothache, backache, stomachache.

I think I am doing well preventing mouth sores but maybe i'm whistling in the dark and the real battle hasn't begun.

I'm trying to figure out how to make myself regular without hurting myself.  Foods don't seem to do it.  I need help. PeriColace might be too strong. Hopefully i'll get it straight before round 2.

Oi. Round 2.  Really?  Do I have too? And things could go different? probably worse? (everyone's saying it)  Please no.  Make it rainbows and kittens please chemo gods. ;-)

lespring, soooo glad you are feeling better. Your posts scared the begeezus out of me.  I'm sorry it was so bad for you but so glad and hopeful that things got better and maybe more manageable.

Timbuktu, I wonder the same thing about treatment. I always read everyone's dx and trtmt and look for patterns. My MO said the Standard of Care for what I had is ACT or TC. She said ACT is slightly more effective. But recommended TC.  Which I thought was interesting, don't we want the most effective for me? But she also said ACT comes with risks that TC doesn't. So maybe my cancer wasn't further enough along to risk the risks.

I hope my posts make sense. I feel they're all redundant. When does chemo brain kick in?

lespring- we have had similar problems with this first round. I felt pretty decent for the most part until day 5. That when my fatigue and leg pain set in. By day 7 I was in getting tuned up with some serious hydration. I felt like I had the flu. I got 4 liters of fluid over 2 days and then had 2 decent days after that. Days 13 and 14 were awful again. Extreme fatigue and achy everywhere. Then on day 15 a switch flipped and I've felt great ever since. Tomorrow is round 2 and we are going to do some tweaking mainly with fluids to keep that from happening again. We shall see....... Hang in there 

Writinghelps, AC-T was reccomended for me.  But my cancer is Grade 3 and I'm stage IIB, so your cancer is smaller and less aggressive. Maybe that's why the less aggressive treatment. 

Amyo - thanks for the welcome. Yes, what the medical staff says to me is that my good healthy habits will work in my favor as I go througth this. I'm a on-again off-again exerciser. I think what I'll do is start wearing my FItbit again and set a goal for 3,000 steps a day -- so a mile of walking plus some just moving around the house. I don't want to be crazy, a goal of 10,000 steps a day is probably not reasonable during chemo. 

I'm hoping to have the nulasta shipped to my house the day after each round. It will spare me another drive to the hospital (through downtown Chicago traffic). A few years ago I was injecting myself with medicine for MS three times a week, so I have no problem poking needles in my belly. The bone pain SE sounds frightening though. I never heard of that before reading it here. I'll ask the chemo nurse if Claritin 24 hour is ok. I've taken Claritin before with no SE. 

The other thing that sounds crazy-scary to me is Compazine. Has anyone read the info that comes with the RX? The list of SE is a mile long and not just the usual dizziness, dry mouth, fatigue, etc.... One side effect is making it hard for your body temp to go down once it rises. This is really, really, bad for MS in the summertime. High body temperature can bring on MS symptoms and its going to be hard enough keeping my temp down over the summer.  I need to ask the MO or chemo nurse to give me an alternative. Medical cannabis comes to mind, but even though it is now legal in IL, the dispensaries are not set up.

Be well and keep cool.

Couture911...have they talked about zofran or Ativan?  I don't take Compazine either, family history of an allergic reaction..I'm not up for testing it out.  

HomeMom...I right there with you on the hair thing...  It hurt tonight when it was blown by the wind. I am sure it is just a precursor for what is to come.

This Friday will be the 14 day mark from my 1st treatment. I am also scheduled to pick up the infamous wig.  I just need it to hold out until then. I did find a fun floppy straw type hat at the Gap outlet today.   If I have to do this, I may as well look good doing it. 

Janice 

When I think about it I tear up. Ick this sucks. Debiann, I have always had fine hair, but a LOT of it. I've thinned out a little the last 5 years and have really been trying to get my hair back, now it will totally go away. Everyone says...  "It'll come back".  They don't have to go bald even for a minute let alone months.

Janice - I bought two wigs before my surgery. One is short for work and the other is a Jennifer Anniston looking wig! Why not??

here we go!! Hi ladies!  My chemo starts Wednesday, and I'm starting to freak out. Got all my meds, passed all my tests (bone scan, CAT scan, Echo, etc). Had surgery on Friday to put the port in, it's weird!!! I can feel it! There was much debate about my chemo regimen, my MO said that either AC-T OR TC would be suitable for my cancer, but since I have a history of heart issues on my fathers side, we went with TC. I also had Lyme disease and meningitis, and since then I have been extremely sensitive to medications of any kind. 

And so it begins, the 12 weeks of torture....scarves, hats, wigs are ordered. 

Home mom, looks like we are starting on the same week. How are you preparing? I was thinking of doing a big grocery shopping trip tomorrow after my appt with my MO. 

Does anyone administer their own nuelasta shot? I asked one of my doctors about that since I live an hour away, but she said it had to be done at the Mayo Clinic. Anyone doing it on their own?? I'm going to ask the other MO tomorrow. 

I've been reading and it looks like most women on the threads are having issues on days 4-5, is that true for others on this thread? 

Wishing everyone a peaceful night sleep. 

PS. I hate when people say "it's only hair", I know that they want to help me but c'mon...even my best friend said she would cut her hair short to support me, but wouldn't shave it because "she would look ridiculous" I said..."um, what do you think I'm going to look like? Thanks for the vote of confidence!"

As far as the Neulasta shot, I do think there are people that give it to themselves so yeah, I would look into that.  Don't forget to take Claritin before!  Best of luck and I hope you are one of the lucky ones that breeze through chemo!

I'm at day 14 and sure enough, my hair is starting to come out. I cut it short last week but looks like I'll be cutting shorter this week. I know it's a losing battle but I'm going to try and hold off on shaving my head for as long as possible.  My first treatment went pretty good with minimal SE. I felt yucky in day 4 but better by next day. I've had pretty good energy so far. I stayed hydrated days before TX and for a week solid after. I did get what I believe to be thrush but I rinsed with baking soda receipe multiple times a day and used biotene which helped a lot. My next TX is June 2 and I pray it goes the same but worried it will be worse. 

ddkath70 - two treatments and no nausea here either - they give you premeds for nausea and there are lots of nausea med choices - I had emend the day of and two days after chemo - they also had something in my premed for nausea and they gave me two prescriptions for nausea meds - I took one pill one time when I thought maybe I was going to get nauseated.  This was a big fear of mine also due to the fact that I had morning sickness for 9 months when I was pregnant and that was horrible.  But so far - that hasn't been an issue.  My biggest issue on the first was neuropathy and constipation.  The second has been bowel issues - not really diarrhea but not normal bowel movements either and a bit of back pain - mid back which may be a UTI or maybe my intestines are inflamed - getting that checked today.  Other that that - minimal other SE's for me.  Don't get me wrong I don't feel normal and general don't feel good but doable so far.  I do feel much better about 10 days out and then feel almost normal from day 14 -20.  

Yes, Lakegirl, about the Ativan. I have a RX for that. I've taken it before and it gave me no problems. And I use a lot of humor with my 12-yr old son. Its gallows humor, but that's how we cope. That and a lot of hugs.

I cut my hair short before my mastectomy. I realized that I would be unable to wash and care for long hair after surgery. It was a great choice. Much easier to take care of. When clumps of hair start to fall out (I guess I can expect that in about 2 weeks) I'll have someone go over my head with the clippers. That will be much less messy than shedding all over the house. I really don't care that much about my hair falling out. It's not permanent. I can wear a fun wig if I want to, experiment with crazy hair colors, wear a baseball cap with fake bangs. 

And to Ddkath70 in Arizona, I will be administering my own neulasta shot as long as my insurance approves of the hospital shipping it to me. I have had other shots shipped to me and insurance paid, so I'm not too concerned. Much better than making an extra drive, parking, checking in, etc.... It just needs to go into fatty tissue so unless you are thin as a twig it should be easy to administer.