Aphinity Trial Pertuzumab

Damiana, that sucks.  It would have been nice to have been able to skip SOME part of the arsenal.  Well most people don't have too much trouble with radiation, it's mostly just a PITA.  It gave me a temporary mood disorder but I think that's unusual.

Yea Nurse76!  Congratulations on being a Chemo Grad - it feels so good doesn't it? Have you started just the Herceptin/ P drug yet?  How is that going?  I so wish I knew if I was getting it or not.  I don't have red hands or feet - but my white blood count stays pretty low.  I've had some neuropathy - but I'm taking B complex and it's helped a lot. My fingernails are quite a mess - I wonder how long that will last and what there is to make them better.  My hair is growing back - it's getting a little bushy now - I'm going on Tuesday to get it evened out - and so back to normal - whatever that is.  Keep us posted on how you are doing!!!! Take good care!

Thanks cvmarilyn! So glad the chemo is behind me. I have been on the H/P treatment since chemo began in November, so it will be interesting to see what happens with my next treatment without the chemo. My finger and toenails are discolored, I just keep them really short. I have neuropathy in my hands, but especially my feet - feels like I walk on balled up socks all the time. I have been taking the B complex vitamins as well, but now that chemo is done, I am hoping for improvement. I did not loose my eyelashes or eyebrows all the way, or my hair - I still have some stubbles on my head. My last MUGA scan showed a decline in cardiac function from before treatment began, but not enough to be worried about yet - glad it is being monitored. I am just very happy to be in the study - the HER2 thing scares me for the future. At least we will be monitored closely for years and hopefully the outcomes of the study will be favorable and help others in the future access this medication regimine.

Nurse 76 -- it's great to be done with Chemo! You will slowly regain some strength and have less fatigue although sometimes the fatigue still raises its ugly head. I slowly increased my activity level and last week I hit a wall so I am dialing it back. Good luck with the rest of your reconstruction! I am scheduled to have my tattoo next week!

I had my 13th treatment last week and my oncologist cut me free from having blood work each time and I only have to see a provider every other time! So my time at the cancer center will decrease. I got a 55 on my echo-cardiogram and they were satisfied with that. I am also scheduled to have my port removed on April 4th. My port has always been a problem so I will go the last 4 treatments with a peripheral vein. I can't wait to get rid of it!

I am developing problems with the soles of my feet. Very dry and cracked with a yellow color. I use a Bert's Bees product with cotton socks at night. My hair is curly and thick and my nose is running less so I think the nose hair is growing.

They didn't find anything on the sonogram and MRI of my left breast but they still want to do one more sonogram. Trying not to worry about that.

Did any of you have to sign an updated copy of the trial paperwork? My trial nurse had me sign the paperwork again as it was a bit more specific about the time involved.

Jane

Hi - I think of you all and hope your SE's are manageable. It's a long haul but we are all going to be OK - I know. I would really like to hear how you are.  Have any of you had your blood be shipped off to Milan?  Mine has - 3 times now - I keep telling them that I think I should go too - just to make sure it gets there OK - or even give them a fresh sample - but so far no go

Hope you write -

Marilyn

Hi GCE - yep they've cut my observation time to half an hour after the pertuzumab - I think that was 3 treatments ago.  I have another one a week from today - then4 to go - I am done in July and will havemy port removed too - can't wait.  When was your last chemo? Mine was Halloween.  My hair's coming back too!  Yea!  I feel pretty good and lately I think that I am getting over cancer. Weird...

So glad you wrote.  I would really like to hear how everyone's doing on the trial.  Keep me/us posted.

Take care,

Marilyn

Hi All. I am at the cancer center having my 15th infusion. My wait time was also refused to 30 minutes; I'm not sure if my blood has been sent to Milan but I think we should all go there! I am actually going to London at the end of the month to attend my daughter's PHD hooding! She is a geneticist and does some work with metastatic breast disease. We are so proud!

Last week I had my troublesome port removed and they also did a biopsy on the left breast because my nipple inverted and they thought they saw something on an MRI, but the results were negative for any cancer! Whew! I am on track to finish up on June 18th! I have had some fatigue lately, but am working with a physical therapist to reduce that. Have any of you met with a dietician specifically addressing hormones present in food? My hair is unruly and curly. I have a modified Afro!

Hope we can all go to Milan someday!

Jane

marilyn, I still drink a little but you know there are probably times I could pass on it and should just for that reason. 

Ok have I already asked everybody about the weird pee smell?  Like I've eaten asparagus, except I haven't?  I had my infusion today and had weird smelling pee later this afternoon.  Obviously hoping it's from pertuzamab!!!

I keep forgetting, I think it's from the vitamin D or the biotin....

Hi Madeleine - Welcome to this group!  You will see, that unfortunately, not many people write - which is a shame.  It'd be really nice to compare notes.  I am nearly done with my treatments - finished official chemo in October and radiation in January. Now I am down to 2 more Herceptin - P drug treatments and then that's it - woo hoo!  You will be there too before you know it.  I'd love to hear from you and share what I've learned along the way.  This is an amazing web site - LOTS of knowledge and support.

Marilyn

Madeleine, Welcome to the breast cancer journey. We are all on the journey but have slightly different stories! I am also at the end of infusions! My last herceptin infusion is Tues June 18th! It will be so great. I have a cardiac workup on Monday. CGE, I am also having a lot of trouble with split,

folding and peeling nails. They just crumble especially on my right hand. I try keeping polish on them so it doesn't look so bad.



My biggest problem at the moment is with the Aetna ins co. Over half of my claims since July 1 are processed wrong and I get contradictory information on the phone. I had a meeting last week with the state bureau of insurance and I have an investigator looking into my problems. This is something I could not of dealt with last year; only recently has my brain been strong enough to tackle this.



Madeleine, We all have a lot of knowledge so please ask us for advice or information along the way.



Jane

Oh - it is interesting that you are getting Perjeta since you are early stage.  I  am guessing it's due to reoccurrence.  But still interesting for me, us because I'd been told that aren't giving it for early stage in general at this point.  I am sorry that you are on this "journey" again.  How are you doing? It is a lot to take in.

Jeb - how awful to have to be dealing with insurance crap.  I've had a bit of trouble after coming back to work with my employer - but I am trying to keep it in perspective.

I am sooo happy that people are writing here.  I too am having problems with my nails.  I bought this Sally Hanson stuff and it did NOTHING.  My last H/P infusion is July 9.  Then the port comes out in August. Jeb and GC you are 3 weeks ahead of me it looks like.  How's your hair?  Someone asked me if I was glad to have it back - duh!!!!!!!!!!

Dear Min2 - ugh.    so sorry.  I know we don't know each other - but I think the common bond with everyone here is that we were just going about life - when wham. It is so hard to explain to anyone else because nobody truly gets the roller coaster we are on.  I just want you to know that if you want you can write me.

Take good care - have dessert first

M

 have a question that may not be in the right forum but I don't know where else to ask it.  It is this.  I see that certain drugs are used for metatastic cancers.  Faslodex which binds to the cell receptors and kills the cancer cell and Xeloda which inhibits the growth of cancer cells for example.

What I would like to know is why these drugs are not used at the outset?  Instead we are given chemo, rads and then if we are ER and PR postive drugs to stop the production of estrogen or to block aromatase.

It seems to me that a drug that binds to the cancer cell receptors and kills it would end the disease and no other treatments would be necessary.  

I just wonder why it would work later but not sooner.

Kathy

madeline, sorry you're feeling lousy.  I didn't have much diahrrhea, but I hear that the best thing is to stay on top of your antinausea meds.  And yes, tons of water, and lots and lots of protein.  And exercise if you can.

chatsworth, those are good questions -- haven't the foggiest.  This thread isn't too active -- maybe a thread with women who are actually on those drugs would get a more helpful response?