TRIPLE POSITIVE GROUP

sam1

Hi got a question, has anyone heard of the Mary Ann clinical trials that are being done for BC.

My Onc that I saw today is trying to get me on to the trial.

Thanks for any comments

geewhiz

Arlene, that sucks!! I would get to a lymphedema trained therapist. Binney on this site is well versed, maybe google some of her posts on this topic. If it's caught early enough, treatment for it is much more successful. hang in there!



I think it was on this thread I posted about the neratinib trial and the bonehead doom and gloom doc. I saw him again yesterday. He said that about 80% of all those who have herceptin, do not recur. The drug started being used widely in 2005, and that is what the studies are showing so far. there is one study that should have released results on 2 years vs one of herceptin, and it has not so he said the buzz in the medical community is that there is probably no advantage. He was very excited about neratinib because it crosses the blood brain barrier and herceptin does not and her2 is well known to mets to brain. Kinda wish he hadn't covered that part so well...I have been dizzy ever since and keep thinking I have brain mets now.

It's funny...I literally have lots of letters behind my name, used to be a business analyst on wall street and my brain turns to mush sitting in front of these docs absorbing everything I can, not processing much at all it seems. On a positive note, he said in all his years of practice he had never seen a patient more well versed on the disease and it's treatments. That brought a smile to me as I wandered the parking lot looking for my car, lol!!!

dancermom

geewhiz,

I know what you mean about looking around the parking lot for your car! LOL

Does anyone know anything about fevers with Herceptin?  I had my second Herceptin treatment on Monday and Monday night got a high fever.  Went up to almost 103.  No other symptoms and all test turned out negative for infection/viruses.  I am going to see what the onc says about it, but wondering if anyone here had any info on it.  They gave me anti-biotics any way, but they are not doing anything to the fever yet.  Tylenol and Advil take care of it, but don't know if it's safe to keep taking them every 4 hours.  I'm scared that the onc will say to stop the Herceptin.  Any info would  be appreciated.

dancermom

Oh, wanted to add no fever after the first infusion, or I should say not this high a fever.  Had a fever of up to 100, but only at night with the first infusion.

lago

geewhiz I think carboplatin & cytoxan both cross the brain blood barrier. I assume you got one fo those. I will admit that was one of the reasons why I wanted to do the neratinib trail… I assume that being node negative means my risk is so much lower that they don't want to include folks like me. At least I'm going with that now eventhough I seen many women HER2+ with no nodes get mets too. Until I have a headache for more than a day that Exedrin can't get rid of I'm not going to worry about it.

No fevers. Just had #12 Tuesday.

Omaz

Hi lago - I also read that carboplatin can cross the blood brain barrier - glad to hear it again!!

ArleneA

Geewiz:  They don't think it is LE but swelling from the Taxotere and it (right now) is just in the forearm with tingling.  What they are concerned about is that it is on the port side and I might need an ultrasound of the arm to make sure there isn't a blood clot.  Why aren't they pro-active and just order the ultrasound.

 Swelling is just minor today.

Arlene 

Omaz

Arlene - I can't remember if I mentioned it here but most of my swelling was in my forearms.  They felt very heavy too and were weak.

carberry

Geewiz  Funny story about the car!!  Cant be an expert on everything

 Dancermom,  would deffinitely keep the onc dept aware of your fever, may not be the herceptin.  I was shocked to find out 18weeks post chemo here that my hematocrit is still a low norm.  I thought by now all bld levels would be back to normal, doc said not to worry it will keep climbing.  Hopefully that antibiotic will kick in soon.

ArleneA

Omaz:  Yes, I read your post about your mid-arm swelling and that makes me feel better.  Today, no swelling but I think I might have a bit of neuropathy too since I'm getting a bit of tingling in my hands but mainly that hand and not so much the one with the surgery.

Omaz

Arlene - keep an eye on it and bug them for an US if you think you need one - (c:

nmoss1000

Hi Ladies! Been down for the count after TX 4 and just catching up . Arlene the swelling sounds horrible and congrats in the 4 !!! and Dragonfly I am with you on the swelling I have gone up and down 8-10 lbs in 24 hrs. I am now up 15lbs up past my starting weight. Granted I have not been mobile like before coupled with chemopause OMG!! I cannot wait for this hell to be over. By body seems to be screaming for a break! TX 4 was a new kind of torture! Leg pain and heaviness coupled with the Nuelasta pain! I'm on Ultram and it help a bit but I am moving like a 90 year old! I hope we all get through this soon and with minimal SE!

ArleneA

Hey NMoss:  The swelling sounds easy compared to what you are dealing with.  I'm so sorry that you are having such a horrible time of it.  Hope you are getting back to normal.  Just 2 left and you are done with the hell.

It scares me a bit to only have 4 when the protocol is 6 but with the potential for heart surgery for these palpitations, I'll sure go with the 4 UNLESS my onc changes her mind.

You take care NMoss and keep us posted.

Arlene

nmoss1000

Hey Arlene! Thanks! I am lucky nothing lasts for More than 5-6 days thank goodness! I am still considering making # 4 or 5 my last. My WBC have dipped a bit and my glucose levels are off the charts.

Omaz

nmoss - I am a few months out now and the 90 year old feeling is getting better. 

ArleneA

NMoss:  someone on here has fluids for 2 days after chemo and perhaps that is something you might want to consider.

I'll be glad when the drippy nose and the horrible weeping eyes goes away and the darn twitching eyes.  Good ole chemo is so kind to us.  AND the horrible rash all over my face and neck....goes away just about the time I get zapped again.

Whine, whine, whine....we are SO allowed to whine. 

nmoss1000

Thanks Omaz ! Good to know there is an end date.

nmoss1000

Oh Arlene whine away!! We are deserving at the least ! #3 hit me with the leaky eyes and nose it took 2 weeks to dry up!

lago

Question How many Herceptins are you all getting? It appears I'm only getting 17 but it seems most are getting 18. Anyone know what's up with that?

saralmom

lago - I counted it up and I am pretty sure I got 17.  I feel like I've heard 17 is normal for Herceptin?

lago

Thanks just wanted to make sure. If it's one thing I've learned it's to double check everything!

SpecialK

ArleneA - I had visible swelling of the forearm on chemo#5 day - my onc PA ordered an ultrasound which I just had this morning.  I also have axillary web syndrome pain, down the bicep, over the inside of the elbow, down the forearm and ends at the top of the hand.  They checked for a clot - don't have one, didn't expect to.  They also put me on a diuretic which was wonderful - for about a week - now doesn't seem to be working.  In the last week the whole top of my hand hurts when I get the slightest bit warm - like go outside for 5 minutes.  It is in the low 90's here - so I am hibernating in the house.

ArleneA

Thanks Special K.  My swelling is/was on the non-surgery side.  My oncologist says that I'll always have pain on the surgery side from the node removal.  I have the tingling going down my arm (surgery side).  I've kept the swelled arm elevated the past few days and today it is fine.  I really think I have a bit of neuropathy.  My onc told me that when you hands/feet become sensitive to the temps (cold or hot), it is a signal of neuropathy.

Our temps are getting warm now too but no 90's yet.  We are unseasonably cool for Nevada.

Arlene

LisaGH

Lago- I am not sure how many total Herceptins I'll get- I'll ask next wk w/ my weekly.

SpecialK- so sorry you are feeling bad- hope you get better soon..

Omaz- good to hear the good news that after chemo it gets better.

I am just a few days away from TCH6- Wednesday next wk. I have gained about 13 pounds- miserable. Got a sinus infection now- counts are fair. My legs are better- the burning is not as bad- only if I walk very far or do stairs. (Right after tx 5 it burned to even move position of legs even if lying down--miserable!!). 

Hope everyone is doing well. I am glad to see the 6th here- for me so far the 3rd tx was my toughest. Not that any are easy. The weight gain is my roughest part- I get very uncomfortable w/ it. Fatigue is still ever present.

Take care- hang in- we are all so close- those of us who started in February- gettting near the end and so happy!!!!

Lisa

karebear76

Hi ladies.

I went to Boston and to my onc and we now have a plan. Herceptin with radiation, and then herceptin cont with navelbine(mellow chemo). I am so glad that I don't have to do TCH!! 

kriskat

Karebear-so glad u have a plan! The important thing is ur getting Herceptin!

bucky317

Hi Arlene,  I am only getting 4 treatments also (of course herceptin every 3 weeks for a year) My onc. told me that he would only reccommend 6 treatments if my onco dx test came back 49 or higher. How is the cold cap working?

ArleneA

Hey Bucky:  I never had a DX test because my Onc said with HER-2+ it doesn't make a difference.  Nice to know that the oncs are starting to realize the 4 versus 6.  Which chemo are you getting?

Cold caps are working.  I still have 50% of my hair and today my hubby verified that I have new little peach fuzz which is odd to me that it would start coming back in while having chemo.  I have a friend whose hair starting coming back while on chemo too.

Arlene

bucky317

ArleneA   -- That is so wonderful!!!!  I researched them and then before I knew it my chemo date approached and it was too late.  I can only hope that the hair gods will give me a better head of hair than what I had. ( thin and bone straight)!!! 

I am on Taxotere Cytoxan and Herceptin. Had my first tx on 5/12 and will have my 2nd one 6/1. I felt fine until day 5 (damn Neulasta shot) terrible bone pain in back,hips, headache. yuck!!!  I have felt fine the last week except now I have an itchy rash on right hand and left eyelid!! oh yeah and teenage pimples again. Saw the nurse practioner today and she said it is prob. from the Taxotere and told me to pick up some Benadryl Cream. I did and it works. I see you had a rash also, did it take long for it to go away?

bucky317

Arlene--- oh and also my first biopsy showed me to be pr + and er + and Her2 neg. Then my oncodx showed my her2 to be equivicable, so my onc. checked it again (3rd time) and it was her2 ++.  It makes you wonder how many her2 + women are not getting the wonder drug Herceptin because of a lab error.  Scary!!!