Calling all TNs

Cocker_Spaniel

I hope I am posting right as I am unsure what to do yet.

Thank you guys for all your posts on vomiting and nausea.  It really made me feel better. I will be taking Emend although it is another name here in New Zealand so that is another comfort.  Its only Saturday and Tuesday seems to be coming around mighty quick.  I've been trying to drink lots of water but it made me wonder why they don't give you something to make you thirsty, though that is easier said than done.  Can you advise on any food to stay away from and did you have trouble eating and drinking.  Did you also get the metallic taste in your mouth. I am 65kg but loose weight easily when I am worried.  I am also a smoker and wished to hell I don't but I don't seem to be able to give it up at the moment. Is the fatigue so bad that you can't work.  So many questions to ask you, so thank you all so much.

Annie   

windysea22

I'm not sure if I am posting this in the right area, but if not, could one of you redirect me?

I am looking for information on any promising clinical trials for metastatic triple negative breast cancer.  This is her 3rd recurrance.

She can't have anymore  adramyacin, taxol, or carboplatinum as she has reached her limit. 

She is currently using vinoreblin and capecitabile but doesn't hold much hope for their effectiveness. 

She lives in Italy, but any informtion you have is SO welcome.

Thanks!

christina1961

Cocker Spaniel,

I did have a metallic taste with chemo but it lasted only a few days each time.  I ended up with heartburn after about the 3rd cycle so I avoided anything spicy .  I finally had to take Prevacid for heartburn, but was able to come off it once finished with the chemo.  I worked pretty much throughout except for 5-8 days during each cycle (I had TAC chemo every 3 weeks  - not sure what type you are getting.) The doctor told me when my white blood cell counts were low to wash any fruits in soapy water.  I found I craved fruits and vegetables during chemo and eating them kept me from having to take laxatives. 

From what I've read during the past year, everyone is so different in their reactions to chemo.  My sister had the very same chemo and never had nausea but got mouth sores.  I never had mouth sores, but had nausea. I drank at least 1.5 L of water the day before and 3 L the day of chemo.  Sometimes I went back in the next day to get fluids through my port so I would feel better. I stayed with my sister during my TAC chemo and she brought me food when I was in bed during the first few days after each chemo. If you are not getting adriamycin you may have less fatigue - or if you are getting two drugs at a time instead of 3.   Good luck and always remember you can't ask too many questions.  After being a patient for a year and depending on others, it feels good to be able to help someone else in some way.

Titan

Annie..wouldn't try to give up smoking right now...after you are done with chemo will be soon enough....why stress out even more?  Plus..chances are the cigs won't taste the same as b-4 anyway...I like wine..alot..but to tell you the truth wine just didn't taste right during chemo even through I had a little....be sure that that that give you an Icy or ice chips during the adriamycin push...that helps with mouth sores...if they don't offer them ASK for them..you are the patient here...ok???  As far as food goes..you will probably want comfort foods...eat them if you want too..chemo is no time to diet...you can lose the weight after you are done and ready to exercise and all that stuff....the best advice given to me was to NOT eat my favorite foods because I would associate them with chemo...so..I didn't...

I used to love bratwurst..but not anymore..we would have it sometimes pre-diagnosis..I can barely choke it down now...I just associate with that time...

I just took water, pop, books, crossword puzzles etc. to chemo...have your friends and family stop in..it's not that bad..really kinda boring if you are just sitting around...remember you get to LEAVE...make yourself comfortable, take your emend and when you are done get the heck out of there for two weeks...  the first time is the freaky time..after that you know what is going on.

Sorry to talk soo much..lol...I'm feeling it for some reason

riley702

Annie, my tastebuds were screwed up during chemo - things just didn't taste right. And I was unable to taste salt, which drove me nuts. I'd add more salt, but all it would do was increase the metallic taste. I was able to taste citrus (orange, lemon, lime), mustard, and vinegar; so I ate a lot of things with that just so I could taste something. Funny story - During chemo, I went to a party at my nephew's in-laws, and among the snacks was a bowl of citrus-flavored Starburst jelly beans. I ate, went back, ate, and finally just swiped the whole bowl and took it into another room. My brother and his wife just looked at me, then cracked up when I whined, "I can't help it. I just want to taste something!" Guess what they got me for Christmas? LOL

Cocker_Spaniel

Me again.  You all talk about nausea and not the vomiting but do you get it really bad, I mean really bad.  As it gets nearer to Tuesday I get more and more doubtful about how I will feel.  Freaking out again I suppose.  There are so many things to think of.  Will I get sick with infection.  Do you wear a mask when you go out. Will the fatigue be bad.  God this is overwhelming.  I'm drinking so much water I could sink a battle ship but my veins don't seem to be getting puffy so will they get the nedle in. When I went for a blood test the nurse had to get it outmy finger and it still flaming hurts.   Is there anyone out there as scatty and dotty as me.   What a life for a crust of bread. Will it ever be over. Will the chemo work if its already spread.  My mind is one heap of questions.  Sorry guys just my worried ramblings but oh so very grateful to you all.

Annie

Cocker_Spaniel

Me again.  You all talk about nausea and not the vomiting but do you get it really bad, I mean really bad.  As it gets nearer to Tuesday I get more and more doubtful about how I will feel.  Freaking out again I suppose.  There are so many things to think of.  Will I get sick with infection.  Do you wear a mask when you go out. Will the fatigue be bad.  God this is overwhelming.  I'm drinking so much water I could sink a battle ship but my veins don't seem to be getting puffy so will they get the nedle in. When I went for a blood test the nurse had to get it outmy finger and it still flaming hurts.   Is there anyone out there as scatty and dotty as me.   What a life for a crust of bread. Will it ever be over. Will the chemo work if its already spread.  My mind is one heap of questions.  Sorry guys just my worried ramblings but oh so very grateful to you all.

Annie

Hope60

Hi Annie - I understand how you feel.  I most people are scared before their first chemo....I know I was.   But it wasn't half as bad as I expected it to be.  Everyone reacts differently...some have a lot of side effects...some have very few.  The first treatment was the scariest for me, but after that I knew what to expect.  I didn't really have nausea...just a queasy feeling sometimes.  Fatigue was manageable and no infections.  My best advice is to take this one day at a time, and tell your onc about any se's you have....there's a lot they can do to help you with them. Also you might want to ask for something to help with anxiety...I took Ativan, and it helped me a lot.  Wishing you the best of luck!

beckyv

Spica16 - thanks so much for the information.  I have my 2nd AC next week and going into with a much better frame of mind than the first.  I am ready to get this over with and move on - so my cruise in June is such an incentive to stay positive and hopefully keep the SEs away!!!!

beckyv

Cocker-Spaniel- it is very normal to feel like you are before your first treatment.  I was the same way.  I had myself so worked up and full of anxiety that I already was feeing nausea before I even started the chemo.  My first round was so much easier than what I was expecting - very little SE - just a bit of "foggy head" and naseua -but so very manageable.  I did not have to miss any work.  I really believe the right frame of mind will help alleviate some of the SEs - I am heading into AC #2 on Tuesday and feel so much stronger in mind and hopefully in body to handle it.   You can do this - you will do this and you will stay strong!!

cc4npg

 Hi guys!  Popping in to say hi.  I think I'm turning into a huge lurker.  I come here and read the boards at least once a week, particularly this thread.  You're in my thoughts all the time, but I just don't post much.  

Annie:   No, you're not the only one who has felt like the world was ending... like there would be no tomorrow... and that you would never be the same.  Nor are you the only one (by far) who has felt total terror at what is happening.  When I was dx, I was horrified.  I couldn't sleep.  I researched and read almost 24/7 for a month.  Everyone here kept telling me to try to relax... eat, sleep, take deep breaths... but I was still scared.  After my bilat mx (a bit over a month from dx), I was somewhat better for a couple weeks, then got really scared again because I was starting 4 rounds of TC.  If you posted what chemo you're taking, I didn't catch it, so remind me.

I haven't heard anyone mention Claritan and Aleve for the nausea.  Many of us used this... started a day or two prior to our chemo... and it really worked.  But on to address your questions...

First things first... everyone reacts differently to chemo.  What I experienced and what others experienced may be completely different for you. Oh, and there's a great little thread called "Anyone on Just Taxotere and Cytoxan" that really helped me.  No new posts there but lots of good info.

• Nausea?  For me, not too bad.  I remember having my first chemo and wondering, "Is this it? I don't feel anything.  Is this what I've been fearing??"  I went shopping after my first chemo.  I felt fine that day.  The days that followed, I felt strange... not real hungry, but hungry, etc.  But it wasn't bad.

• Vomiting?  I personally never did, not once that I recall. 

• Hospitalization.. sick with infection?  For me, yes, once.  I didn't have Neulasta after my first chemo for white blood counts.  Onc wasn't sure I needed it (I was 43).  Well, I did.  My counts dropped to 500 and I was in the hospital for 3 days or so.  But that was it.  After that, I had Neulasta after each treatment and counts were fine.  No, I chose not to go many places while I was doing chemo.  After being in the hospital with neupogenic fever, I did try to wear a mask especially during days 8-12 after treatment.  It was hard for me to breathe through the mask though... like, I felt like I was suffocating... so I prefered not to go out.

• Fatigue?  Hmmm.... let me think.        It wasn't bad.  I mean, yes I remember a few times being more tired than normal and it was a weird kind of tired... tired but couldn't rest kinda tired.  But I wasn't my normal "I can go like the Energizer Bunny" kinda normal.  I was weak... quite a bit... but it was totally doable.

• Veins and such?  Are you getting a port?  I didn't have one.  Again, I had 4 rounds of Taxotere and Cytoxan.  My veins were "ok".  When my counts dropped and I was in the hospital, they were horrible, but they never had a problem getting one for my treatments.

• Drinking water?  Yes, water is good, but there is such a thing as drinking too much.  You want to drink plenty of water prior to chemo so they can get a vein easily.  You want to drink plenty of water after treatment to get the chemo out of your system and avoid bad side effects.  Get something besides water too... flavored water might taste good... other ladies can help me out in this area with suggestions.

• Metalic taste?  Well, let me put it to you this way... for me, I had "A" taste in my mouth, but I don't know how to describe it.  I remember feeling like my mouth had a "coating" on it that wouldn't come off.  It was the strangest thing.  I think it was a precursor to thrush, which I almost got but didn't really.

• Hair loss?  Unfortunately, yes.  While I was in the hospital, I began losing my hair.  We cut it all the week after.  My hair was long and straight, down to my thigh.  This was hard for me, and I was scared it wouldn't grow back, but my onc smiled and told me it would, and she was right. 

The thing to remember is you are INDIVIDUAL.  You will experience some side effects, but they will be different from mine. The MOST important thing you can do for yourself is tell yourself your mind is making this MUCH worse than the actual event will be.  If you can get yourself to breathe and relax, then you'll be able to eat and sleep and drink... which are the other things you really need to do.  Your first treatment Tuesday will be long gone by this time next week... that helped me through a lot of things.  And you'll find, truly, it wasn't as bad as you thought.  The ladies here are totally WONDERFUL to help.  We feel what you feel, cry with you, dance with you, and comfort you.  We've ALL been there, so you don't have to pretend with us.  You can be YOU... yell... vent... curse... cry... be silly... whatever you feel at the time.  You're in good company.

Laurajane:  So good to hear from you!  I continue to pray for you.  Tell MBJ I'm so sorry to hear she's having to go through this and she's in my prayers.  I wish I were closer.. my husband repairs computers and might have been able to help her with her other computer.

I'm almost a year and a half from dx.  I just had a small revision... fat grafting.  I think the results will make me done for now.  I continue seeing the onc every 2-3 months.  So far, all is fine, and I have no reason to feel it will be different.  Chemo markers last July were, I think, 32 and dropped to 21 in September.  I don't know what they are now.. just went in last week.  Still seeing a pulmonologist for lung nodules, which are believed completely seperate from BC and probably Histoplasmosis.  I get another CT in March.  

Wishing you all good health today...

laurajane

Windy sea- I've also done the gamut on chemos. I've tried them all at least once and many I've tried in different forms like carboplatin/ Gemzar, Cisplatin /cetuximab, abraxane and a couple other taxols etc. I'm currently getting Halavan and it's working for me right now. It has helped a lot of other woman too. You can research online for clinical trials just google it. Wishing you success in this battle.



Annie, BeckyV, and others just starting chemo- I hope the other ladies on here have helped answer your questions. I'm hoping that your chemo days are soon behind you with no or few SE's. You can get through this. Wishing all of you success also with your battles against this beast.



It was a joy watching my 2 1/2 yr old grandson last night. He loves to hear me tell him stories and keeps asking me "what else grandmaa" in this cute southern twang elongating the maaa part. Its so cute. I of course can't help myself and always have surprizes for him. We watched lady in the tramp while he curled up in my lap. My daughter and her husband had a great time too, on their date. I'm so happy that I am feeling better now. I never dreamed I could feel this good again. The pain pills are working just fine. I wish I didn't need them and I still don't have any use in my left arm. The tumors have wrapped around my nerves which I found out from the CT is what is causing so much of my pain. But that is ok. I'm so happy to be here. The sun is shining today and we had a light snow. My hellebores are blooming in my garden and I have a smile on my face. it's so nice having coffee with all of you this morning and I hope you all have a great day. I'm going to a comedy club tonight with some friends and I'm looking forward to laughing my petunias off.

Anonymous

Hey guys... I've decided I'm not a lurker in here.... I'm a *skimmer*. I skim over everything really fast and seldom post anymore.

WRT "Woman in Black"... I saw it yesterday... loved it. Classic Gothic horror. Radcliffe was excellent in the role.

Cheers

OBXK

Annie, I found that my GI system did better with low fiber foods, I also took a stool softener everyday for about a week after chemo. The metallic taste, will leave a few weeks, after you've finished treatment. I always gained weight, on chemo. Some of the pre chemo meds, cause you to retain water. When I was dx 8 years ago, I too smoked, and I remember wishing I could smoke, while I was having my infusion! Don't beat yourself up over that now.

For me, the worst days were 2-5. Feels a bit like the GI flu. Some people can and do, work through chemo. I would not have been able to. Drink what you are comfortable with. I use to pick up a big Vanilla milkshake to take to infusion, along with some peanut butter crackers. Just try to stay hydrated. Try to take in at least 2 ounces an hour. Rest and nutrition arethe only tools you have in your kit, so try to make your calories count and rest often. You can do this... We're all in your pocket!

Karen

OBXK

LJ- your evening with the grandson, sounds perfect. I am 50, with boys 12 and 17, it is the wish to hold a grandchild, that has gotten me through many a dark day. I hope you have a wonderful evening. </p>

LRM216

CC4 -

Claritan and/or Aleve is for the Neulasta shot, not for nausea from chemo.  It's the big guns for the chemo; Emend, Zofran, compazine, etc.

mitymuffin

Cocker Spaniel,  My Onc gave benedryl and steroids with the chemo, to prevent allergic reactions, and those gave me more of an immediate reaction than the chemo. Every chemo session I would ask for less of the antihistimine and steroid, and they did cut it back. Just remember to ask for what you need!

I did accupunture as close after the chemo as I could, and I think that helped with side effects. I also walked as much as I felt I could, and I think exercise helps.  It certainly helped me mentally.

laurajane

OBXK-my daughter is 26 and my son is 18. I am 48. I did have a great time with him. I look forward to sharing stories about our grandchildren in years to come. I had a good time tonight but I really kind of wished I'd stayed at home in my pajamas.LOL I hope you had a nice evening too.



Heidi- so nice to hear from you. Miss your jokes though. I bet you'd be great at standup comedy too.



Mitymuffin- great seeing you on here too. Glad you coworker that. I was thinking the same thing.



Good night all. Sweet dreams.

OBXK

LJ - I look forward to it too! I did stay home, in my PJs. Made a big pot of Chicken Noodle soup. Still feeling a little punk, didn't want to spread my germs around.

Wishing everyone a good day!

cc4npg

LRM:  Thanks for the correction.  How quickly we forget!  But hey, that can be a good thing right?  Either way, I had very little trouble with nausea and I really didn't even take the Zofran.  I just don't like meds if I don't need them because each one I take can have pretty significant side effects... probably because I never take meds... lol.  I couldn't take Compazine because it's related to Phenergan, which I'm allergic to.  I do remember now taking the Claritan and Aleve for the Neulasta, and I never had any real pain to speak of with that, only some minor discomfort.  

I really hope Annie and the rest who are just starting chemo have an easy time with little side effects. 

monisch

Hi everyone,

wow I hvent logged in here in so long.... MBJ  nice to see a familiar name here.

Question:  does anyone else experience shoulder pain ?  i have shoulder pain on the right side ( not shoulder blade ), my BC was however on the left side. I've had the pain for about 2 months now, shaking it off to " i slept wrong " idea.  I have a Orthopedic Appt. on the 23 rd, but was wondering if anyone else has had this post treatments ???......  kinda makes me nervous.... I try to think positive but that old negative thought keeps popping into my head.

You gals have a wonderful sunday !!!  Monica

LRM216

CC4:

No problem - who can remember all the different names of all the many pills, and what they were taken for!  I only remembered it because it did nothing for my Neulasta pain at all.  I was sooooo disappointed because I actually felt the Neulasta pain was far worse than anything the chemo did to me and it seemed to last so long.  I didn't like the compazine, as I swear - it made me more feel worse, but the Emend was great and did it's job completely, and the Zofran was good too.  Ugh, just remembering it all makes me feel queasy right now!  Be well!

Linda

TifJ

Monica- i developed a frozen shoulder about 6 weeks PFC. I carried my left arm (BC was on right) by my side for 7 weeks after my infected port was removed. My physical therapist said she took a class that suggested that women between 40 and 60 are prone to frozen shoulder due to extreme changes in hormones. Well, chemo induced menopause is defintely an extreme hormonal change! So perhaps it was a combination of both that caused mine. I did see an orthopedist, The x-rays showed nothing so he had me begin PT. It took 10 months to get my range of motion back. It will never be 100%, but it is close.

I would have it checked it out by your MO. he then can refer you to an orthopedist.

Anonymous

Here are some smiles for dog lovers:

https://www.facebook.com/media/set/?set=a.10150776873218018.502767.393450018017&type=3

Anonymous

And some more to make you smile:

https://fbcdn-sphotos-a.akamaihd.net/hphotos-ak-snc7/428192_10151278071485191_226813135190_22978562_414269978_n.jpg

Anonymous

Am I the only one getting that d*mn BC.org survey pop-up *every* time I log in? Even after I've taken the d*mn thing?

I'd think that once you'd taken their survey multiple times (the same one, no less) you wouldn't have it popping up anymore.

Enough already!

christina1961

Heidi,

Love those photos! He has amazing photos - I shared on facebook. Thanks!

Huskerkkc

Monisch, I think shoulder issues are fairly common with BC. I've seen suggested on many threads that if something is bothering you after two weeks you should probably get it checked out. I had a lumpectomy on the right side last February. I was having shoulder issues then, which caused me to have an open MRI because I couldn't hold my arm above my shoulder. I did for rads, however. Once all my chemo, rads, etc. was done, the shoulder became more of an issue and my PCP referred me for physical therapy. I was actually seen by an occupational therapist, who diagnosed mild lymphedema. After I started with her a few weeks, they did a shoulder eval and I had some range of motion issues, so I have back to back OT/PT appts twice a week. 90 minutes total. It has really helped. They figure that the issues I had previous, added to the radiation which can cause tightness and so can chemo, aggrevated a lingering problem. I don't have 100% motion, but they have gotten it to "functional", which means I can use that side to do most things: lifting overhead, reaching behind, out to the side, etc.

 Heidi, I've gotten the survey several times. I took the first one on my iPad, then it popped up on my computer. I figured it didn't recognize my log-in, only that this computer hadn't responded to it.

TifJ

Heidi- it only pops up once in a while for me. I have never taken it though.

monisch

thanks for the info....Im hoping it's only " frozen shoulder " thats bothering me. I think i'm going into menopause as well...... sometimes i get spotting and the cramps situation and it only lasts for one or two days.. nothing to brag about.  Had a pelvic exam done with sonogram and all was okay.  It's been over a year now since I finished my Chemo treatments and Rads.

Monica