April 2013 Chemo Group

Anne, I missed your post, I'm so sorry you are so sick! I hope you are starting to feel better & get out of the hospital soon. Hugs to you.

Ugh Pamela really???? That is such bad timing!! My BS just told me she is leaving. She was the one doc I actually liked (I mean ever, in my life... Doctors & I don't mix.) Fortunately I'm done with surgery but now I have to see a new BS for all my followups. Also there is a NP who covered for my MO once & I discovered I LOVED her... well I guess she is leaving too. So I'm just stuck with my MO who I'm not crazy about. He's nice enough but may be the least reassuring doc I've ever met in my life. I'm kind of terrified of him. I went today for my pre-chemo appt. He asked me about all my symptoms and seemed interested/concerned but didn't actually SAY anything. Not, "Oh that's normal, don't worry about it," or, "That's concerning, let's keep an eye on it," or "Take XYZ to help with that." He just asked me my side effects and silently examined me and said, "See you in a month, we'll start you on Tamoxifen." (He has never discussed Tamoxifen with me, or anything else for that matter -- I get all my info from the internet or the nurse navigator.) He & I just don't seem to communicate well at all. I wish he'd talk to me!!! I keep thinking he's not talking because he secretly knows I am worse off than I think I am. OK that sounds paranoid huh? Well anyway. Not sure why I'm rambling on but you've definitely got my sympathy! But suppress the teenage urges & speak to her LOL because you'd really only be punishing yourself if you didn't! Also, since the MO is the one it seems you'll be dealing with the longest, maybe this is a good time to insist they get you in with a different one who you'll be comfortable seeing long term? 

Kerri,

Sorry you feel so bad.



Did you take the Claritan to try and ward of the bone pain from the Nulasta?

(One Claritan 24 the morning of Nulasta shot and one each morning for the next 7 days)

It does not work for everyone, but worth the try if your MO is not against it.

(Mine didn't care one way or the other)



Regarding the mouth, was it sores? Try chewing on ice chips during the taxotere drip (my drip is one hour)...I have not had problems with mouth sores. I did have maybe 2-3 days of a strange feeling in my throat, which was "worse" the first chemo as I had not iced my mouth the entire hour (was talking too much!)



My "so tired I need to sleep" phase was about day 5-6 on first round and second round was day 4-5. Take your naps if you can. I felt "normal" by day 7 or 8. Definitely felt fine for week 3.



Are you eating protein and foods that help your red blood cells?

At my second chemo they told me my vitamin D was lower and I needed to take supplements. MO told me it would give me more energy and I wouldn't feel so tired. Funny thing was I wasn't tired at all! (Except those few days)



One last thought, try and get up and get moving....I had read on these boards that a lot of women "pushed through" the exhausted feeling and felt better for it. I did that first time around, just told the hubby I needed to walk around the cul-de-sac...it was raining, I didn't care. Carried my umbrella and did a few to a rounds, and I DID feel like I had more energy.



Keep writing those questions down for the MO. You can even call them and tell them how you are feeling (that's what they get paid for!) and they might offer you some good advice, why wait!



Pat

Pat& Indenial - I did take the claratin, apparently it didn't work. I took some left over Vicodin from my surgery and that didn't even touch it. I called the MO office and they told me I could add 600mg Ibuprofen every 6 hours x 48 hours. That in combo with the Vicodin did the trick. But that had to be the worse pain I ever had- couldn't walk, move the wrong way- even sitting on the toilet hurt. The pain was in my hips, legs, arms, chest and back. It had never completely gone away, but it was managable.

The mouth- at first it just felt like there was a gauze stuck in my mouth- that "yuck" feeling. I was using Biotene faithfully. Then my throat began to feel sore. My tongue never felt sore. I looked at my tongue and it was shrivled up and white and noticed white patches down my throat. I called the MO and got an appt with the nurse practitioner that day. She said it was thrush and placed me on Diflucan- it was better in 2 days.  I did suck on ice during the taxotere.

I also now have what looks to be a chemical burn at the site where my IV was. It was red the day I saw the nurse practitioner and I showed her. She said it can happen with taxotere a couple of days later. Well- Friday night- it blistered and opened. I put antibiotic ointment on it. I think I am going to ask for a PICC line for the next 3 infusions. I don't want this happening again. It definately is going to scar.

I am not feeling " tired" i am just wiped out so easily and my joints ache- hips, back, neck and legs. I am not napping during the day. I have been walking around the house- we have gotten a lot of rain the last couple of days. I will try today to at least walk around my cul de sac- it is a beautiful day out.

I guess I didn't expect to feel this crappy still on day 9.  And I feel like I am getting depressed about it. I want to do some things, but I can't seem to find the motivation to do them. Today, I had such a horrible sinus headache and body aches, I pretty much have been on the sofa all day. Dozed off a little because I didn't sleep well last night due to this sinus headache- and my husband worked his 24 hour shift last night, so I don't normally sleep well when he does his 2 24 shifts each week.

The MOs office is pretty good about answering questions when you call. I see the MO herself this wednesday for follow up and have all my questions written down on an index card. I am also hoping to get the results of my Lyme disease test and have my BRACA testing done then.  I am starting to feel like I cannot do this to myself 3 more times- and getting very discouraged... And my hair isn't even falling out yet!!!

Thank you all for listening!

Kerri

Pat-

I had Lyme last spring and got treated. About 3 weeks before I was due to start chemo- my dog tested positive on a routine lyme test. So I called my PCP and asked to be tested. The test came back the day of chemo and it looked positive- but was confusing. So I asked them to pull up my last years one and they looked almost the same. So the MO had me retested when they did my prechemo labs to see what was what. And the test is still not back yet..

That is why I got the nulesata shot already. I have a feeling that they are going to put me on the antibiotic anyway just to be safe...But that antibiotic is brutal on my stomach- abde pain, diarrhea and yeast infections....OMG! As if the cancer isn't enough!!

Indenial-

I have always been prone to sinus headaches. I started to get one when the Cytoxan was infusing. The nurse gave me a Claratin and it seemed to have done the trick. Saturday I did not take the Claratin and that was the day I got the headache. So I took it yesterday and this morning. I woke up with another one today- not unusual for me.Especially with all this pollen flying around and that fact that we are due to get some rain today.

The IV site doesn't look infected, it just looks like I have a burn. Ive been putting antibiotic ointment on it. I see the MO on wednesday. I am keeping a close eye on it. I do feel a little less achy today, so I am hoping that continues for the day.

Thanks

Kerri

I had my second lumpectomy on June 7th to widen margins, and the port for chemo was installed or however you describe it-- See the oncologist the 14th for the first time and hopefully to get an explanation of the final pathology and what it all means in terms of treatment- I try to read your posts here so I can get an education on what to expect but I just find myself getting lightheaded and ready to pass out when I do-- anyone else experience this? I want to know what to expect so I can be somewhat prepared-but this little voice inside me says, you'll be fine, you don't need to know ahead of time -it will be different for you- I know that little voice is like the biggest liar in my life at the moment-sometimes I feel like little pieces of the puzzle are being kept from me- I know this is nothing more than my own paranoia..

Thanks to you all for sharing and posting your experiences here..

Hi Sarajane....

I was the same as you with trying to get information.  I don't remember getting light headed but there are some posts that make you shake with fear.  I tried to stay away from those.  Oy!!   I am glad that you can get information from guys and gals that are going through chemo.  I know it helped me before I started chemo, but I have some advice for you....DON'T ASSUME YOU ARE GOING TO HAVE SIDE EFFECTS!  And until you know your treatment plan, you won't know the chemo your onc is recommending.

I am receiving 6X TC and will be having my 4th infusion tomorrow.  My husband drops me off and picks me up because there isn't room in the infusion room for him to hang around.  I could probably drive myself but I like having the company to and from.  I do not have a port, but I think it is easier for the chemo nurses if you have a port.  The night before each infusion and the night of, I take steroids.  The day after chemo, I get a Neulasta shot.  I also take claritin and zantac and Aleve starting with the day after chemo and for about the next 4 days.  These medications help control side effects like heartburn, aches, etc.  I have a prescription for nauseau and take it as needed.  I also have pills for thrush should I get hit with that.  I power walk every day and I work full time except on treatment day.  Treatment day is Tuesday and I work from home that Thursday and Friday as those are the work days I am most tired and I can call off if needed.  If you have children to care for, make sure that you ask for help driving them, preparing meals and keeping up with the laundry especially the days after your treatment when you feel the most tired.  (That can be different for each person but it is predictable.)  I don't go to bed when I am tired because it makes me feel worse.  Everyone is different.  Instead I keep a pillow and blankey in the family room and snuggle on the couch if it is not bedtime.  I put together jigsaw puzzles which helps the time go by and keeps me upright and active.  I firmly believe that you have to power through the fatigue.  And drink lots of water and when you think that you have drunk too much...drink some more.  The worst for me is that I lose my taste buds for many, many days after each treatment.  I lost about 10 lbs so far which isn't good but it is because food doesn't taste good to me.  I am working on that and will probably have it mastered by the time of my last treatment...HA!.  What works best is to eat bland foods because when they taste blah...you won't be so disappointed.  But that is easier said than done.  I found that hard boiled eggs are a good way to get protein and non-sweetened cereal...like Cheerios is a good snack.  Anything sweet is disgusting to me.

Anyway, best to you as you navigate through your staging and treatment plan.  You will do great!

Sandra

Daffy, sorry to hear about the spot, but possibly it was not cancerous? Thank goodness it is gone, and they will watch you closely I am sure. Hang in there, those kids of yours are lucky one's for sure!

PamelaKay: Sorry about all your turnaround in the middle of treatment, what a headache! I don't care much for my oncologist, but at least he listens to me and is somewhat flexible.

Curious, now that I am on Taxol: the regimine was supposed to be Taxol every two weeks followed by Herceptin every week OR every 3 weeks. He put me on Taxol every three weeks and Herceptin every week. Anyone else on this schedule? I also heard that Taxol can be given weekly. It is really screwing up my schedule as I am still trying to work and the office is not super close to me, so I would prefer both every three weeks if that is possible? I am going to ask him about this. I will do ultimately what is best, just wondering what everyone else's schedules are like.

(((HUGS))) and sorry to all who are not feeling well. Still having visions of black nails falling off, LOL - NOT really funny but gotta make light somewhere.

                                                                                                 Heather

Sarajaneeva, this is all scarey. Still is even after you have had a treatment or two. My advice is to look at the list of things that are posted for newbies to have on hand before starting chemo. I didn't need every single thing but I have used a whole lot of them. And it is empowering to know that whatever SE you have to deal with, you are prepared and don't have to rely on some one to go to the store for you. You won't have every SE but you will have some most likely. I took the Neulasta shot after my 2nd treatment. The SE's for me were really bad. Including major depression, deep bone aches, sleeplessness, stabbing joint pain. I elected not to use it this 3rd trip. So far, it's been a better round. This is day 8. I do experience a couple of days that I am not able to function.

But I have managed to work most of the time. I haven't seen my surgeon since the post op visit. I'm guessing you won't miss him.

Kobrien I have had 3 taxotere infusions and all 3 times I have had a vein reaction. It becomes red and itchy. I

have been told to take benadryl and ibuprofen -even though ibuprofen is off limits with this chemo.We have tried different order of infusion, separate veins. It is the taxotere. Not sure what we will try this next time. My onc

has given me the option to discuss not doing the 4th treatment. Not sure what to do with that.

OK I am terrified of black fingernails!! And I feel handicapped if I cut my nails too short, never mind lose them altogether. I keep saying losing my nails would be worse for me than losing my hair. So far they are hanging on, though lately I have had some random pains around my nails??? Weird.

MsPharoah YES I still probably should be shaving my legs too! I almost always wear jeans so I can get away without bothering but I am annoyed there is still leg hair. It is pretty sparse though, same with underarms, and if I hadn't shaved my head I would look like a Dr. Seuss character with stray random hairs sticking out amidst the baldness!

Wednesday is my LAST CHEMO!!!! I am sooo looking forward to being done. Already had surgery and no rads so I will be really totally done, just have to start Tamoxifen. Why am I still scared to death every round though??? I have in the back of my mind that THIS last round will be the one to kill me. I don't know where I got that idea (do people even die from chemo itself nowadays???) but it's stuck in my head & won't leave! As bad as each round has been, I feel like I've sailed through relatively unscathed, but I'm still so apprehensive thinking my luck could change now.

Also how on earth does anyone sleep with hot flashes?? They are still waking me up every hour or two. It's really sad that I now consider 2-3 hours straight a "good night of sleep." Will I ever sleep through the night again??? (Actually I haven't slept through the night in nearly 5 years thanks to my son LOL but now HE is sleeping well and I'm still up all night long!!)

MsPharoah

I don't have to shave my legs or underarms yet still have eyebrows and eyelashes.  I don't understand it, but I am not complaining. 

Yup - I still would have to shave my legs - assuming I didn't wear levis.  I really don't want to loose eyebrows & lashes so I'm using Latisse.  Hope that works.

I just disovered my right big toenail is totally black.  It was hurting last week but I didn't worry about it.  Darn.  I used McDavid Sports injury bags for my toes since I could wrap them on with an ace bandage.  Guess I should have used the same frozen peas I'm using for my fingers.  I already had ridges on my fingernails but can now see white lines running across above the cuticles.

Kobrian - go for the PICC.  I'm so glad I have a port since it will be useful for a long time to come.  I'm half way through - 3 more infusions to go - then herceptin & perjeta for at least a year. They're using the port to draw blood so my mild LE is not aggravated.  Also to insert contrast for PET/CT scans and MRIs.  So much nicer than constant sticks.

AllieM -- Congrats on finishing chemo!!!!!

Heather214 -- I'll be starting Taxol + Herceptin weekly for twelve weeks soon (followed by herceptin every three weeks until a year is complete). My understanding is that the herceptin will continue a year, no matter whether you are taking it weekly or every three weeks). Do you know if your Taxol is Dose Dense? I believe the dose dense Taxol is spaced out a little longer with herceptin on the off weeks. I talked to the nurse yesterday, she said the herceptin alone is only about 30 minute to an hour (prep-time, etc), so many people come in at the beginning or end of their work day for it. Maybe your MO can make some adjustments for your work schedule.

Indenial: AWESOME that you are almost done! SO happy for you! Yes, I have quite the phobia over black or falling off fingernails, but hopefully you have escaped that possibility at this point, LOL! I am not sleeping well either, waking frequently soaked in sweat.

Mspharoah: You give me HOPE! My nails honestly have not changed any other than a white line or two, but the fear is still there.

I am trying to figure out how the Drs. decide between a PICC line and a port? I really would have preferred not to have gotten a port, though it is convenient, it is uncomfortable! But, I have seen so many women complain of "vein burn" that I am thankful I have something.

My body hair is pretty much gone, and my eyelashes are thinning finally. Still have my eyebrows, but those were pretty non-existent to begin with.

6cats: Yes, my Taxol is dose-dense. I would prefer your schedule, with the Taxol weekly and Herceptin every 3 weeks? I have no idea how they decide. Whatever will be, will be. My employer will work with me, they have been great. Hoping the Taxol treatments go as well as the first one. Almost NO nausea.

Wishing everyone a great day - HUGS to all!

THOUGHT FOR THE DAY:

Hi biker girl. I am ILC too and had the oncotype test done. Interestingly, it took two tries to test because the lab didn't send enough carcinoma the first time What???? Anyway as you may have read, ILC is normally hormone positive and her2 negative and it is not uncommon for the results to be in the low category. I was hoping for a Low score but got a 24. Middle of the middle Yikes! So I am doing chemo and happy to do it. I hope you have the mildest treatment, but don't be afraid of chemo...very doable.



Hair alert!

Head - fuzzy all over 3 treatments of hair killing TC and still fuzzy

Down there - tmi but Looks like my scalp...

Pits - smooth yay

Legs - gawd still shaving. Yesterday I had wind drag-yuck

Arms, toes hands - hairy

Upper lip - fuzzy

Face - fuzzy

The nasty whisker on my chin GONE. I am gonna be pi$$ed if it grows back with a mole under it!



Port, no port

I am getting my 4th treatment while i am typing this. No port. Got stuck 3 times before it worked, so maybe I needed a port? Feel bad for poor Arva, the onc nurse..she just couldn't do it this time or last. Sure hope the last two treatments go better.