Perjeta/Herceptin/Taxotere

formygirls

Surly,

Sorry you got mixed news. I got the same results that the last two times i had scans with Navelbine. My left lobe in the liver was full of tumors when I was dx but my right lobe was clean. I started Navelbine and was on it for 5 months. My TMs dropped and the tumors in my left lobe shrank but many new ones popped up in the right lobe. We were confused and finally dropped Navelbine as it was working only on part of the cancer. With Perjeta my liver is responding well but my lung tumors have not changed but have at least stayed stable.



I hope you get TDM1 and that works well for you. TDM1 is supposed to be great drug. I wish you all the best.

lilylady

Dear Surly,

  I am so sad about your news. I am glad you already have a plan in place but we will miss your input on this thread. This is just so unexpected-I can imagine how hard it was to post your results. You are in my thoughts and prayers-I wish I could say something to make it better.

lilylady

Dear Surly,

  I am so sad about your news. I am glad you already have a plan in place but we will miss your input on this thread. This is just so unexpected-I can imagine how hard it was to post your results. You are in my thoughts and prayers-I wish I could say something to make it better.

lilylady

Dear Surly,

  I am so sad about your news. I am glad you already have a plan in place but we will miss your input on this thread. This is just so unexpected-I can imagine how hard it was to post your results. You are in my thoughts and prayers-I wish I could say something to make it better.

lilylady

Dear Surly,

  I am so sad about your news. I am glad you already have a plan in place but we will miss your input on this thread. This is just so unexpected-I can imagine how hard it was to post your results. You are in my thoughts and prayers-I wish I could say something to make it better.

annieareyouok

Surly,

So sorry about your results. Good luck on the TDM1 study. Thank goodness there are so many options for us to try.Keep us posted.

Annie

annieareyouok

Surly,

So sorry about your results. Good luck on the TDM1 study. Thank goodness there are so many options for us to try.Keep us posted.

Annie

kingcour

Surly,

Praying hard for you! TDM1 will hopefully be just what you needed, and this was what was meant to happen in order to guide you in that direction.

sueopp

Ladies, I just returned from the beach (no computer access) and have been catching up. 

Sury, dearhart, so sorry that you got "mixed" results - very  confusing, but thank goodness your oncologist is on the ball and ready to move you on to an even better drug for you.  Process - that seems to be what it's all about.  If not this path, then that one.  So glad that you (and we) have options.  So many women have been soaring high with TDM1, and I know you will be one of them. Onward!  We will all be there, continuing to cheer you on.

And for the rest of you, go-girls-go! Best to all,  SUE 

Surly

Thank you all so much for all of your kind words and well wishes. I know you are all familiar with heartbreaking news and uncertainty and dark thoughts. But also that there is always reason and, somehow, ability, to pick oneself up and keep on. I am not going away from this thread or others and will continue to check in on you all. I'm so glad I am part of such an amazing group of individuals. 

Take care.

S. 

pearlady

Surly I'm praying hard for you and the TDM1.  My Dr. had spoken to me about TDM1 prior to my starting the perjeta and had told me that the TDM1 was really what he was waiting for to become available.  He has been frustrated that the drug is not yet available to all of us.  I'm so pleased that your Dr. is able to get you into the trial.   I will continue praying for you.  It's great that we have options.  

nicole0714

Surly, hang in there. A good friend of mine who is an onc at Moffit, was more excited about TDM1 than perjeta. He said there is always new stuff coming out for Her2 patients...you'll get through this!

I'm excited for all of those who are responding to this regimen. Amazing news.

I do have a question about SUV on the PET. What is a "normal" number? Most of mine are less than 7, with the exception of the retroperitoneal, although they are decreasing and have shrunk. Also, my liver (which had diffuse mets), shows "no metabolic activity" in the tumors. Overall, my PET showed "significant improvement".

Funny, this morning, the lymph node in my neck that was done to the size of a pea, swelled up again and is sore like before. I was feeling it yesterday, so maybe I aggravated it. Hate to be paranoid with every little thing, but I'll get to the point where I can let go of it.

lilylady

 Nicole,

The SUV numbers go from 1 to 20 with 1 being the baseline and 20 being oh shit. My onc says anything below a 4 isn't even at tumor level. Most of mine were from 9 to 16 and now all of mine except 1 are below 3.

  Sounds like you had some great results also-my liver also showed clean and that thing was huge in July.

  I go tuesday for #4

formygirls

Nicole,

In my recent PET the SUV for the sternum was 1.2 and the liver showed no metabolic activity. There was no uptake in the body. Previously they were around SUV 13. However, the diagnostic ct of the pelvis did show tumors in the liver but they were improved from before. Lungs also tumors (stable) but my PET was clean. Not sure why the PET does not show them.



Congrats on your great results.

nicole0714

Thanks! Mine aren't that low (yet), but they're moving in that direction.

My retroperitoneal are still 17!!!

Others are under 10 after 2 treatments. Wow, I'm impressed with your numbers!! Hope mine are there with the next scan.

aic

Starting my first ever chemo treatment tomorrow... scared Wish me luck....

kingcour

Praying for you aic. My first one was a piece of cake. Take things to keep you busy and some good healthy snacks. My son drew a picture for me of bows and arrows shooting what he imagined the cancer to look like, so I imagine that every time I go. The chemo goes in and shoots some good stuff in your body which makes you sick, but who cares as long as it is shooting the cancer monsters at the same time! Tell yourself that you are going to handle this like a pro. Positive thoughts are a must!



Let us know how it goes! Hugs!

aic

What a great pic from your son! Thank you so much for the prayers. Did you take it easy the first couple days? I know everyone's "good" days are different. Hate missing my son's karate class tomorrow.

kingcour

The first time I did take it easy for a few days. Now I have figured out my pattern. I am fine for the two days after treatment. I get tired on the third day, have my big D side effect kick in the next day, and then I am usually back to me day 7 or 8. Now I find I do better if I push myself to keep going and stay busy. My last treatment was OB Thursday. I hosted a bridesmaids luncheon the next day for my cousin, went to the rehearsal and dinner with four kids in tow after that, had my son's football jamboree in the hot Georgia sun the next morning, and then the wedding and reception until 11 pm that night. I was tired Sunday and Monday, but by Wednesday I was shampooing my carpets and rearranging furniture. I also go to the gym 4 to 5 days per week and raise four kids, so daily life is busy for me! No naps here! Just tell yourself you can do it, pray hard, eat well, drink lots of water, and laugh at it when you can!

aic

I hope mine goes that way...I like the idea of knowing your bad days...I have a 7 year old boy so I am hoping to keep up with him as much as possible! I have definitely heard how important being active is too. Thank you so much for the great advice. So thankful to have you all!

lilylady

AIC,

  If they steroid you up you will usually find the 2 days after tx are like being on speed. I get a beet red face for those 2 days and feel flushed but otherwise no SES. I do good until the weekend. I get my tx on Tuesdays so by Sat night the bathroom crap starts. Mine lasts for 5 days. The 3rd week I am totally normal. I have never had any nausea or even heartburn with this.

  I will be real honest and say that for a lot of us the first tx was the worst. It is what the call a loading dose-extra drugs to get your levels up.  It also made the tx take longer because of the amount they gave me.I have been on chemo for almost 2 years and it was the first time it ever made me sick. Not telling you this to scare you-just a warning. A big part of my problem was I didn;t take in enough fluids. My taste buds go right away and even water is horrid but you have to keep the stuff running in. Drinking and staying active keep the drugs moving thru and it really makes the difference.

  Each tx after has been getting better. Seems very do-able. You will need to stock up on tissues-the dang drippy nose is relentless!! After 3 tx the pattern for good/bad days is pretty well established but other than the first tx it hasn;t shut me down from doing what I want.

  Did anyone mention about icing your fingers and toes during the taxotere? I don;t know if the other ladies are doing it but I take bags of ice and lay over my bare toes and stick my hands in a bag of ice too. This is supposed to keep nails from lifting. Also use some Sally Hansen or other clear nail hardener all the time.

  The other thing is a shot called Neulasta. It is to stimulate bone marrow and get your RBC to produce. It is given within 48 hrs of chemo. If you take Claritan the day before and I do it 2 days afterwards it keeps the bone ache down. Plain old Claritan-not the Claritan-D. I had nver needed it before this chemo. You might ask tomorrow if they plan on giving it to you.

  If I think of anything else I will post again. I take a bag with magazines, treats, my ice bags. I think I am the only person in our practice not to have an I-pad or Kindle. They have Wi-Fi at most places. I also wear comfy and WARM clothes (sweats). You will be sitting there a long while with cold fluids running in you. they also keep our place like a meat locker. I don;t know where your port is but I try to wear a shirt that makes it easy to access the port and doesn;t pull at it. Like a v-neck. Then I just wear a hoodie that zips up to stay warm.

  I just feel like I have set you up to be a nervous wreck-sorry about that but you will do fine.The not knowing is always the worst part. You are in on the ground floor of the best drug aavailable for us-that's a great way to start.

aic

Lily lady, thank you for the info. I love getting a thorough post like that. I am here with herceptin rolling in. Feeling the beet face already. So far just hot flashy. Trying to calm my nerves as I am sure that isn't helping. Scared about the next two as they said they would be watching me the most as those go in for side effects. I have heard about the icing. Wasn't going to do it, but as warm as I am, it may be a good idea haha. Did you ice?

lilylady

I iced last summer  thru 6 taxotere tx and had no nail troubles at all-but others didn;t ice and they had no troubles either. I saw enough picture of nasty nails to figure it was worth the small trouble it is to bring my ice. You can count on the onc office discounting most things you will learn on here. Like the Claritan/Neulasta thing.

 I guess I thought you were going tomorrow-should have seen when you posted. They give methe pre-treatment bag then the H then the Perjeta and the taxotere is last. I go tomorrow at 9:30.

  Did they give you the Benadryl? It works like a sleeping pill for me. I have always refused it in the past but he asked nicely-then insisted I needed to do it this time around. I pass out before the H is even finshed-I am sure I am snoring and drooling in public-but I haven't had any reactions either.

Good luck-eat hearty tonight in case the taste buds crap out fast. Also I lost my hair at Day 10 this time. day 17 last year. It had just gotten long enough to get a stylish haircut when it fell out again this time. It actually is gowing in some soft downy fuzz right now-not real hair but better than being shiny bald.

lilylady

I iced last summer  thru 6 taxotere tx and had no nail troubles at all-but others didn;t ice and they had no troubles either. I saw enough picture of nasty nails to figure it was worth the small trouble it is to bring my ice. You can count on the onc office discounting most things you will learn on here. Like the Claritan/Neulasta thing.

 I guess I thought you were going tomorrow-should have seen when you posted. They give methe pre-treatment bag then the H then the Perjeta and the taxotere is last. I go tomorrow at 9:30.

  Did they give you the Benadryl? It works like a sleeping pill for me. I have always refused it in the past but he asked nicely-then insisted I needed to do it this time around. I pass out before the H is even finshed-I am sure I am snoring and drooling in public-but I haven't had any reactions either.

Good luck-eat hearty tonight in case the taste buds crap out fast. Also I lost my hair at Day 10 this time. day 17 last year. It had just gotten long enough to get a stylish haircut when it fell out again this time. It actually is gowing in some soft downy fuzz right now-not real hair but better than being shiny bald.

formygirls

I would add the icing as LIlylady said. I have completed 4 txs and did not ice. All my nails on both hands are damaged and in the process of lifting up. It is gross. I think icing is worth a try.

aic

Thank you...starting tax in a bit....hope they have bags for my ice or I may have to skip this one...nervous about the tax.

formygirls

Aic,

You should be fine either way. Most people do not have problems with their nails. Sorry, I did not mean to make you nervous.

aic

Formygirls , the chemo made me nervous, not you I survived my first chemo....wooohoooo! Not looking forward to the potential se to come, but one under my belt. Thank you to everyone for the tips and encouragement.

pearlady

AIC you will be fine.  The first one is definitely the toughest.  It does get better from there.  I have to say that the fourth time must be a charm.  Had my fourth last Wednesday and here it is almost a week later and very little of the big D.  A little more tired than previously, but I'll take tired over the big D any day.  My Dr. promised that this would happen, but it was hard to believe him when I was running to the b-room every five minutes starting on day 4.  Even food is more appealing to me than it was my first three cycles.

Lily good luck today with number 4. Hope you feel as good as I do.  Scans at the end of October.  Keeping my fingers crossed.

lilylady

Well finished #4-but it took 5 hrs. I told him I didn't want the Bendaryl so we bargained and he said I could skip it if I went for a slow drip so they took 5 hrs-OMG-that was as long as the first double dose. It was worth itnot to feel drugged out the rest of the day.

  I also asked about what a "course" of theis treatment would be. I think it was Formygirls that said her guy said she would continue the Taxotere indefinitely. My guy told me today that we would stop the Tax at 6 or at the very most at 8. He said it is way too toxic to stay on it for any longer than that. He also said that doesn't mean we wouldn't re-introduce it at a later date. My cancer burden is reduced so much he doesn't think we will need it any more than the 6 tx. After the Tax stops the Perjeta and Her would continue. I will not be scanning until after #6 or 12 weeks after the Sept scan. That would make it the week before Christmas.

  I was glad to hear I wouldn;t be bald indefintely.After I finished the TCH the dang herceptin really slowed down the growth-then I failed on it and it started growing like a weed but I had just managed to grow enough to get my first haitcut before it fell out again. I do have some fuzzy chemo hair growing in.

  It was good to talk about the scan results face to face. I am still the only one in the practice on the Perjeta. He was so thrilled. We figured out I am back where I was in Oct 2011 so I regressed a whole years worth.

 Red blood stuff was still really low so Neulasta for me on Thursday. Everything else wasn;r far off normal.

  AIC -hope you are still feeling OK