Perjeta/Herceptin/Taxotere

Lilylady,

,

My onc did say we would continue till it kept working but we were also thinking for the next 2-3 months only. My tumor load and brain mets are bad so we rarely talk beyond a few weeks. It makes us both nervous. She said that we could do up to 8 txs as there was safety data and 6 was the standard for Taxotere . So it is consistent with what your onc said. She also mentioned that she was not sure of safety data beyond 8 txs but we would cross that bridge when we got there. Right now I have only completed 4 txs so I have a long way to go. I have not been feeling good lately with pain so I am worried that the chemo has stopped working. I have scans next week so I will find out but I am very worried. Cancer progressed on Navelbine so I am really hoping to get a longer run on this chemo.

Congrats to those who have finished your 4th....still feeling ok, but waiting for the other shoe to drop on the se...been a hydrating fool and active, but bracing myself for what's to come...a few mouth sores and some heartburn....not looking forward to the potential for bone pain....as always, so glad I have "met" all of you awesome ladies!

formygirls - thinking of you today, and really hoping that the scans next week will show good progress.  Scanxiety is absolutely the worst!  Will send a little prayer for you - keep on keep'n on, hon.   SUE 

Hi

I've got a question for those of you who have used Clariton for bone pain. Have you used it for the pain caused by Neulasta or due to the Taxotere?  I am only on the Taxotere and I do get horrible bone pain. Mu next infusion is Monday and I wanted to give the clariton a try but I wasn't sure which drug it is reacting to. 

Or maybe it will work for either. ?  

Thanks 

Hi lilylady... you made my night checking on me The past two days have been a little ugh...lots of body pains and aches especially upper body. Tongue issues and no taste buds, but no fever or nausea yet....gi issues but manageable... the pain is the biggest bummer... did the Claritin and very random advil....any suggestions? Just feel like I can't get comfortable Hoping it will be uphill until the next tx at least?

How many treatments are you ladies supposed to do total? My onc said in the trial, the women did 12, and that is what he wants me to do as long as I am tolerating it ok. After that, Perjeta and Herceptin as maintenance. Yes, Taxotere is "toxic", but so is cancer. All chemotherapies are essentially toxic. That is how they work.



AIC- The Claritan always works for me. I forgot to take it one time, and I will NEVER forget again! Glad you are managing your effects. It gets easier.

Not to hijack the thread either, Surly but I'm curious as to where the trial is. My onc wants either perjeta or TDM1 for me next but doesn't see much hope for getting perjeta due to insurance. Of course TDM1 is not yet available outside of a trial. She expects it may be approved by the end of the year but I'm sure she won't let me just it back and twiddle my thumbs until then.

I saw something a while back about T DM1, and it sounded like a very promising option.

I to will be watching for the outcome. Good luck to you Surley!!!

Re T-DM1: It will be open as to which drug I'm getting. And the onc is talking to me about what drug she thinks would be best for me in case I don't get into the study drug group. I hear that T-DM1 doesn't have a lot of side effects. Actually, there is the usual long list of them with potentially serious ones for a small percentage of patients. But it's not like some drugs that hit really hard. And there is no placebo arm.

Thanks so much for your well wishes! I won't occupy this thread with more talk about this. Maybe I'll let you know if I get in but will find a new thread. Carry on! 

Surly you shouldn't feel that you are occuppying the thread.  I'm certain that everyone wants to hear what is recommended and how you are progressing.  We are all in this together.

So I had my fourth cycle of the perjeta/herptin almost two weeks ago.  Still taking afinitor which is also causing the big D.  Really much better than previous treatments, however I did speak too soon.  Instead of 3 days later for the big D, it was 6 days.  Then it was the same as previously, relentless and difficult to go anywhere past 5:00 pm.  Also difficult commuting home from work as I work in NYC and have to take a train home.  Strange thing, however, is that I do have my appetite back.  The food now looks good, tastes good and smells good, which was not the case the first three treatments, but its difficult to eat knowing that in less then an hour,  I'll have the discomfort.  I have a consult with my onc on Wednesday to discuss the progress and ongoing plan.  I guess I'm pleased that the appetite has returned, although I wish the big D would disappear.  But it is progress and perhaps next time there will be more relief.   

Lilylady,

Thanks for asking and checking on me. I was supposed to have scans this morning but my ins denied it last night. I am not surprised as I had a PET CT and two diagnostic CTs of the pelvis/abd and chest on aug 29. Today it will be only six weeks and most insurance companies like atleast 8 weeks between scans. My onc has to appeal and it will probably be approved in a couple of weeks. I also thought six weeks between scans was too soon but my onc wants me scanned every six weeks. But I am so full of scanaxiety these last few days. I have been feeling horrible with slight pain in my sternum and headaches and do not know if it is cancer or my new sleeping meds. I had a brain MRI on sep 12 so it is too soon to do another scan for these headaches. I constantly feel like I am in a fog and feel drugged. Anybody else feel like that?



I go for tx 5 tomorrow and will get my TM also done. Tumor markers tend to be accurate for me so I will get an idea if the chemo has stopped working. I am a worry wart as my TM had dropped three weeks ago. I felt so good after tx 2 and 3. It was amazing. Those six weeks were perhaps the best I have felt since getting mets in feb. it is depressing to slide back again. I wish I had done more during those six weeks:( My scans at tx 3 were the first scans that did not show progression so I am afraid of slipping again. I guess I am in a mental funk and depressed and in that dark place again. I go for tx 5 tomorrow and also the last of my intrathecal chemo for my CNS mets. I really hope I can stay on this perjeta combo for a long time. I am now used to the side effects and my ins has approved this for another three months.

sorry for the long post. It helps me to just share all this with you. No one else gets this.

I completed tx 5 today. Went ok--- but was a long day as I was there from 7.30 to 4.00. Had my tumor marker done today and it did not drop for the first time since we started this tx. It gets tested every time and always drops 15 to 20 points. That combined with the pain I am having probably means I have progression. (can you tell I am a glass half empty person:) ) On a happier note, I had my last cycle of intrathecal chemo today as they do six treatments at a time. Hopefully, I can stay off that for a while as the treatment was getting painful.

My onc and I discussed next chemo options if perjetA combo has stopped working. Obviously we will not change any tx till I have scans in the next couple of weeks and we can see what if anything is going on. I had a good cry today as I was hoping to get a long run on this combo. I am still hoping that all is well and my TM has just stabilized because my cancer is stable(trying to think positive). When I was on Navelbine it worked for a few weeks and then the TM stopped dropping at 3 months and I had progression on my scans. I am really praying this time around my TM has become stable as my cancer is stable. It cannot always keep dropping and at some point will have to level out. I am an engineer and can get really anal looking at the graphs and trends and history online. That is my nature!! I like this tx and need to get a longer run on this chemo or I will be out of options quickly. I am now waiting for the insurance to approve scans. I had good scans six weeks ago...how can things change so quickly? Either I have a super smart cancer or I just have pain unrelated to cancer. Hoping for the latter. Ironically they approved the Perjeta combo for 3 more months. Thank you for letting me get this out of my system and listening to me. No one other than my dh gets this. He was there all day with me.



I hope everyone is doing well on their txs.

Fujimama-I do think this combo gets more tolerable with every tx. All the best with side effects from tx 2.