TRIPLE POSITIVE GROUP

Anonymous

BJI
Yeah! Stories like yours helps me ( can't speak for others) a lot... Please don't feel guilty ... I'm surprised that I'm feeling this better after 9 days after chemo . It gives me hope..
Having a good attitude DOES help..... its not always attainable on the bad days and that is ok.. we're allowed to feel sad .... but just knowing there's a light at the end of the tunnel help on those dark days...

Never say your sorry feeling good.. we are all happy that you do !

Hugs from TN.
Denise

moodyblues

Denise.  I had a bit of constipation day one and two after chemo and then went too far to alleviate that and then had diarrhea.  I know the battle.  Feel better soon!

SpecialK

hap - have them slow the Herceptin infusion back to 60 mins, preferably 90 mins. I had all of my Herceptin with chemo at 90 min infusions and never had any pain, first H only after chemo was complete was done in 30 mins and I was miserable. Slowed it down after that and had no further problems. If you center gives you trouble, know that it is not mandatory to run it in 30 - the dosing guidelines are 30-90, and it does make a difference - I have seen it too many times for it to be a fluke

Anonymous

Thanks Moody....its been :::cough::: interesting for sure ..

Hugs from TN
Denise

Anonymous

SK,
Thank you for that advice.. both my H and P were at 90 mins due to it being a "loading" dose .. whatever that means..
but they did tell me that it wouldn't take that long after that.. but if it's going make me miserable ..then well.. I don't mind spending the time ..
I will talk to the MO about it at our next appt.

Hugs from TN
Denise

SpecialK

Denise - the loading dose is a larger initial dose - often why the first infusion has more intense side effects. A lot of patients find that subsequent infusions have somewhat milder side effects, at least until closer to the end when the cumulative nature may make some aspects stronger - like fatigue or muscle burning upon exertion due to reduced hemoglobin. I kept infusion times statis throughout chemo - never sped them up, and after the 30 min H only fiasco, went back to 90 minute infusions for the remainder of the year. I did well enough with those infusion times I felt I didn't want to shorten them.

PoseyGirl

Hi Hapb,

I am surprised your MO said 85 percent chance when you are just stage 1a?? What do others think? With full treatment, I would expect 90 to 95 percent. I realize we recur or we don't recur, but I believe that is still a bit low. I had two oncs tell me that if neoadjuvant chemo wipes out all the cancer, then myself at 3a has about an 80 to 85 percent chance of no recurrence. A friend of mine with a top world oncologist at Duke said the same. I know they can't fully know and I am picking, but I'm saying I think you are in a good spot.

BellasMomToo

Denise -- I also had fevers (of 101+) that started several days after an infusion. The fevers only lasted 12 to 48 hours. When I had the first fever, I called the MO's office. They had me get blood & urine tests and a chest xray and put me on antibiotics for 5 days. (All test were neg.) The fever only lasted 24 hours. When I had subsequent fevers, I didn't bother calling the MO's office. But would tell them about the fever during my followup. The fact that I didn't call when I had the fever upset them -- but I'm stubborn and if the fever lasted more than 48 hours I would have called. They did acknowledge that, in my case, the fevers were just side effects since they didn't last.

So just be aware that some fevers may just be side effects, but continue to call the MO's office as directed.

I also had bad diarrhea after my first TCHP infusion. Constipation and diarrhea started with round 2.

It sounds like you're doing fine. Fortunately there are good days towards the end of a cycle.

Anonymous

BellasMom
Thank you ... its a was a rough row to hoe... but I made it I think... I know all this is very serious but the Chemo RN who did the chemo class put the fear of G-D in me...
Contacting the MO/RN during office hours has worked out really well using the Vanderbilt Portal on line .. so I don't have to keep calling the office.. they talked me off the ledge ....
Hope next round will be better..
Tonight I might have done something I may regret... I ate spaghetti and I ate more than I have in two weeks... I was soooo stuffed ... thought I was going to die!! lol ...
But Tums and anti nausea pills to the rescues..

Thank you for the support!

Hugs from TN
Denise

PoseyGirl

hi Hapb,

They don't have higher numbers. It makes no sense. It doesn't really matter, ultimately. I don't think there are clear and firm numbers that are cut and dried and universally agreed upon . But I personally still believe that full treatment is the way to go. Sorry for being repetitive on that!

moodyblues

Denise.  Several times since I started chemo, I've sat down and really ate!  I mean a second plate and I could have eaten more.  I think maybe our bodies become depleted and really hungry and we could devour the plate as well as the food.  Mine was fried squash and mac and cheese.  Oh my goodness! Good!  I didn't get sick, I hope that you felt while after you ate the spaghetti. 

Ladies, I am a bit better with chemo brain, the jitters are gone too thank goodness!

For those of you that only have the Herceptin yet to finish, how is it with JUST Herceptin, I understand it is a therapy for the HER2 and not truly a chemo.  How are you all feeling with just the Herceptin?  I have 4 more to go with combined (TCH) and then 6 treatments just the Herceptin. 

PoseyGirl

I have four more Herceptin treatments left in total. I'm ok with the Herceptin...I get some minor aches and pains (and, yes, referring back to a few comments earlier here, I do get them in my back). I used to get a lot of chills and a bit of rash with it too, but not anymore. It's pretty easy...

Upheld

I am 6 days out past my second round of TCHP. Main side effects up until yesterday have been the jittery, buzzy, can't keep my thoughts straight in my head. I couldn't sit still and went non-stop throughout the days doing things. Then yesterday, I slept until 11:30 in the morning, got up and stayed up 7 hours, went back to bed and slept 11 more hours. Yesterday my son took me out to visit some friends and then for a ride and then to the grocery. It wore me out in a good way. I woke up this morning with a clear head. The diarrhea hasn't started yet but it did last round about this time.

I took nausea medicine the last 5 days Every six to eight hours. Food, of course, has no taste. I've been eating very light but yesterday had a 6-inch turkey sub from Subway. Didn't want the cheese and lettuce so just had the meat and the bread and some potato chips. For some reason, anything potatoes really taste good to me. French fries are something I'm craving now. Also, ice cream tastes wonderful and I can even taste the vanilla. I wonder if I am hungry as I need something on my stomach those first five days every 2 to 3 hours. I don't know if I should be forcing myself to eat more or not.

For those of you with the dry mouth, I got Xylimelts on Amazon and they work great. They were a suggestion somewhere on this site. It says to put 2 in your mouth when you go to bed but I have only been using one.

I have a question about vitamins. I have always taken a multivitamin and 1000 mg of vitamin C every day. I asked my oncologist about it and he said it was fine although I read on here not to take vitamins. Can anyone give me some advice please?

Reading all of your posts encourages me and helps me to pray for us and to be thankful for how well many of us are doing. Thanks to everyone for posting and encouraging us!

moodyblues

KB870, Poseygirl and Hapb.  Thank you for your replies.  I hope that Herceptin alone will have less 'brain' 'thinking' SE's. 

SpecialK

hap - slow your Herceptin infusion time next time and see if it helps - it often does. I would request 90 minutes in light of your side effects this time. The vitamin C is an antioxidant which can provide protection to your tumor cells and potentially make the chemo less effective. Orange juice may be not recommended for some of the same reasons, but also acidic foods tend to irritate the GI tract - chemo sensitizes that area (thus the nausea and GI distress) because the mucosal GI system is lined with fast turnover cells, the very kind affected by the drugs.

Anonymous

Upheld,
My MO said just a Multi Vit. while on chemo ... and NO Vit. C ... didn't say any thing about citrus fruits tho...

Today has been pretty good my 10th day out from chemo and 9th day out from Neulasta... but I think I over did it yesterday a bit... kind of tired and foggy today , might be from where my cpap wasn't connected all to my mask most of the night!!!!!!!! lol Long story... needless to say the hose won't fall off again!

But up and gong...even tho I been doing crafts and stuff... just in the right mind to do crafts and such.... I'm bored!


My port is is a little sore right now.. I think I lifted too much ...

I'm eating good... every once in awhile a bone pain here or there... no nausea even tho I did take a anti nausea pill ( not zofran it makes me crazy ) before bed...

Was looking at the calendar only 11 more days until round 2# ::sigh ::: and then all this starts again... but at least after that only 4 more rounds!

Cancer sucks...


Hugs from TN
Denise

Anonymous

What is it about potatoes!
Last week at the worst the only thing I wanted was mash potatoes and applesauce or baked potatoes...
Or plan Lay's chips which FYI a small bag has more potassium .. less calories ... less sodium ...and more protein than the Gatorade Aid ...


Hugs from TN
Denise

BellasMomToo

I've had my 6th infusion of Herceptin only. I'm pretty sure my drippy nose is due to allergies and not Herceptin. Sometimes I feel itchy, but I don't have any rashes. Don't know if this is related to the Herceptin. Otherwise, no known SEs. My infusion is fast - 30 minutes cause I never had a bad reaction. (Never had a bad reaction to the infusions during TCHP either.)

I didn't care for potatoes while on chemo. The taste was OK, but the texture was odd -- very grainy. During chemo my tastebuds were wacky and I was sometimes sensitive to food textures.

Kattis894

What is a MammaPrint? never heard about this....:)

SpecialK

kattis - it is a genetic assay test, similar to Oncotype Dx, that is available for patients including Her2+, which Oncotype Dx can't be used for. Here is a link:

http://www.agendia.com/healthcare-professionals/breast-cancer/mammaprint/

I had it done in 2010, but it is being used more now both as an alternative to Oncotype Dx, and for those whose Oncotype Dx result puts them in the dreaded gray area - it provides a high risk or low risk result only so makes the chemotherapy decision more clear cut. Most Her2+ patients don't have either test done as chemo and targeted therapies are more of a given, my test was done on a biopsy sample before my Her2+ status was known.

Kattis894

Thank you Special K. I will ask my onc about it when I see him for my yearly meeting end of July. Then it has been a year since my diagnosis. What a year this has been. Well, according to what I know I am NED at this point. Never asked about genetics but my dads sister died of breast cancer 40 years ago so there is a possibility. I have heard of Barc but never this kind.

Suburbs

Hi. Everyone undergoing chemo, hang in there. I thought it would never end and reading your updates reminds me of how far I have come. You are helping me even though I have finished. Strangely, the time does fly quickly. The incredible experts here also helped me greatly with anxiety reducing solutions and side effect management. I am cheering you on.

MLMSC

Hi all, I have learned a lot from these boards. I don't post often. Just a quick update, I have four more of my every three week Herceptin treatments left. Seems like a lifetime ago - One year next week, when I got my diagnosis then had the lumpectomy, got the port, started my Taxol and Herceptin, continued on Herceptin, had radiation etc. etc. etc.

At this point I am basically back to my normal self. I have no side effects from the Herceptin infusions and in fact have a nice lunch after treatment and then do my usual full day volunteer work the following day. I think I have a bit of chemo brain and can't multi task any more. I have a few treatable side effects from the Anastrozole.

Oh, I have a super curly hair. I had it cut so it looks like it has some kind of style and then just last week I had it colored as it was coming in very grey. My original hair was straight and was a dark blonde or light brown. But this new hair has lots and lots of grey and lots of curls. I was completely bald from early October to late January. The hair started to come in about 8weeks after taxol was finished.

My last treatment will be August 25. Regardless of where you all live, I will ring the bell so loudly, you will all hear it . Best wishes for easy days for everyone.

M

Sooz714

hi...I'm jumping in. Not sure how this works. All I know is I'm a wreck!! After 5 TCH infusions my legs so weak barely able to climb stairs. Numb fingers, weak arms. Chronic diarrhea. Constant nausea despite lots of anti nausea meds. I've gained 20 lbs! I'm so depressed I'm weepy and I'm sick of this!! Really struggling to keep a good attitude. I'm having a horrible terrible no good very bad day! I thought I was tougher than this :

Anonymous

Sooz first off ::: hugs::::: I'm so sorry

Have you talked talked with your MO about all this? Maybe there is something medication wise they can give you ...

Also, have you tried icing down your hands and feet when you get the Taxotere?

Cancer can suck the happiness out of happiest person.. I let the tears flow.. always feel better afterwards

Hugs from TN
Denise

Anonymous

Looking forward in hearing your bell being rang!!!!! Hugs!

Denise

SpecialK

kattis - most of the genetic assay tests available are designed to tell you whether to do chemo or not - at this point, for you, that is a done deal, so unless your insurance would cover it I am not sure it would be worth doing. It will only identify the genetic makeup of your tumor, this type of testing does not look as specifically at whether or not there is a genetic cancer link to others in your family - like BRCA testing does.

kae_md99

one more thing i noticed with my first herceptin only infusion, i am now having diarrhea!

SpecialK

kae - if you are complete with chemo then add a probiotic, if you are not already taking one. I have D-based IBS, and this made a huge difference for me when I was doing H only infusions. I know you have a more complex GI situation than most of us.

ElaineTherese

HapB,

It will depend on your oncologist. My (soon-to-be-ex) oncologist is a scanner; she thought that I should have an MRI ever other year. (My last PET scan was in August 2015; my last MRI was in September 2015.) But, I have no idea what my new oncologist will recommend. Often, oncologists won't recommend a scan unless you have symptoms that last longer than two weeks.

Since you had a lumpectomy, you should be getting mammograms every six months. I get those, and if the radiologist sees anything on the mammogram results, I am instantly whisked into the ultrasound room for further study. (That's happened to me once -- it was benign.)

Some oncologists do tumor markers (I think Special K has those done). Mine hasn't, but we'll see about my new oncologist.