These SE's are no JOKE!
 

Hi All~

It's been a week since my 1st Pertuzumab+
Herceptin+Taxotere infusion & I'm having a rough time.
I've been so concerned bout the Pertuzumab SE's that I forgot that Taxotere comes with it's own bag of tricks:(

Initially it was just GI issues - the big D and constant abdominal pain, but now I also have a new rash on different spots of my torso, spontaneous nose bleeds,
itchy/sore eyebrows & eyelids, itchy scalp and now, mouth sores. My poor mouth feels like I've eaten 5 bags of salt & vinegar potato chips & my tongue is too big for my mouth. And I'm more fatigued in spite of my Hgb & Hct are almost normal.

I guess I had gotten bit spoiled on my 5 week reprieve from chemo during the holidays & my chest radiation, so I forgot what it feels like to always feel a little like poo.
I even got an adjusted dose of taxotere because my plateletts are low - I can't imagine how I would feel on whole dose of Taxotere.
Since this regimen is only q3weeks, I'm hoping these SE's will get better these next two weeks and even abate with each successive cycle. I want to be on this combo as long as I can & I don't want to give up on this combo because the SE's are so rough. I don't know how I did it before, so many times before.

Oh, I forgot to update how the chest radiation for SVCS went. By evidence of my symptoms, it seems to have been very effective. The swelling into my face & neck is all but completely resolved, my ears/head doesn't feel stuffed up, but most importantly, I can bend over or crouch down without feeling like my head's going to explode. I can see my collarbones again and the veiny blue veins in my chest have disappeared. And I can sleep flat again!
I finished on January 10, and will follow up with the Rad Onc at that time. I'm not schedule for a CT scan, but my NP said I can request one if I choose.

So the journey continues and so far 2013 is starting off better than last year.
This time last year I was switching to my 14th line of treatment, before Pertuzumab was approved and nothing left in my medicine cabinet. And WBR for 8 lesions in my brain.
This year my brain remains NED from successful WBR, the last combo I was on worked for about a year, which is pretty darn good stretch after 10.5yrs exposure to so so many chemos, my most recent chest rads did their job
and I'm on a new breakthrough drug that will help me kick is Stage IV Monster down again.

Always Keeping the Faith~

Jessica

Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR;)
6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 – Yay! Resume chemoJ
6/25/12 – Chemo break again due to low counts L
6/28/12 – PET Scan & Brain MRI this week…
NED IS BACK!!! NED in the HEAD, NED in the BODY!
10/26/12 – Still NED in the HEAD, but single troublesome node in chest, precariously close
to superior vena cava/heart. Not a perfect scan, but pretty darn good.
Maintain current treatment and Echocardiogram on 11/1 to keep an eye on node.11/1/12 –echo shows normal cardiac function J & node non-threating,
but experiencing symptoms of Superior Vena Cava Syndrome (obstruction/compression)
12/3 - hold cytoxan & methotrexate bc counts too low.
12/13-moved up PET scan due to increased SVC symptoms
12/14 –No more NEDL node progression causing increased SVC symptoms
12/17 – repeat echo & new chest mri for closer look…
Radiation to chest node recommended, change of systemic treatment pending
12/20-1/10 -15 rounds of rads to chest for SVCS
1/8/13- Brain still NED!
1/17 - Started Pertuzumab, Taxotere, Herceptin - these SE's are pretty tough!

Re: These SE's are no JOKE!
 

Jessica
Don't know what to say other than you are one brave warrior! I really admire your strength and tenacity and sincerely hope though difficult this combo will really work well for you.
Hugs
Ellie

Re: These SE's are no JOKE!
 

Im so sorry you are having all these side effects. Ugh. As many treatments as you have gone through, I probably don't have any helpful suggestions you haven't already heard or tried, but... When I was on Taxotere I used a product called Ulcerease for those awful mouth sores. It helps as far as numbing everything and making you able to eat. Certainly doesn't help with the way everything tastes. :( It's about eight dollars a bottle, and its a mouth rinse. I also had a rash and took just basic Benadryl and that helped some. The first few days were the worst, as with most. Big hugs to you and lots of prayers that these side effects lessen and you are able to feel more like yourself.

Re: These SE's are no JOKE!
 

Ulcerease! I was trying to think of that name just as I read Ksgal's post. It was a lifesaver for me. Helped me to sleep when the mouth sores were bad.

Taxotere gave me a flushed face, but not really a rash - that must be from the P?

SO glad to hear that you are breathing better and the fluid backup has dissipated. Now you know not to wait if anything like that happens again. Or maybe it is your onc who should know.

Hoping this next week will be one with fewer side effects so you can have a few good days.

Re: These SE's are no JOKE!
 

Jessica,

I am glad the radiation went well.

On the chemo front, some people find weekly Taxol more tolerable than Taxotere. I know I didn't find Taxol too bad. Could you switch? Of course, this means weekly infusions. I did three weeks on, one week off for TCH.

Good luck!

JB

Re: These SE's are no JOKE!
 

Jessica, I was knocked down by the taxotere too! Amazing how even a short break makes us forget. I also got it q3w and did find all the s/e got better. I had loaded up on the "magic mouthwash" at the first hint of mouth sores and ended up not using it. Hopefully you can get a handle on that because that was horrible. My NP over drugged me, and I ended up with dueling big D and big C.

I didn't have rash, but I think and hope that for you it is a good sign that the pertuzumab is working.

Glad to hear the other issues which were so scary around the holidays seem to be resolving! And especially good to hear you are beginning 2013 with optimism, you deserve that and I hope it is a harbinger of the year to come.

You are the best, my friend. ALWAYS KEEPING FAITH!

Re: These SE's are no JOKE!
 

Miracle Mouth wash is what my doctor prescribed me! As soon as I felt the tip of my tongue sore I started using it and I see why it got its name! It works quick! The only thing bad is you gargle with it and then you have to swallow it and it tastes awful. But a couple days of that And mouth sores were gone!

Re: These SE's are no JOKE!
 

The numb tongue bugged me, but it was better than painful-you-can't-eat mouth.

Re: These SE's are no JOKE!
 

Hi Jessica, really hope it gets easier for you..... and as you always say, 'always keeping the faith'!!
Best wishes
Marie

Re: These SE's are no JOKE!
 

Hi Jessica,
You are an amazing woman, to have been through so much and still fighting! Glad to hear about the positive results of the chest rads, and can sympathise with the problems of Taxotere - but it did the job for me, and you should benefit from the Pertuzamab as well. Best of luck with the new regime... Pam

Re: These SE's are no JOKE!
 

Oh Jessica, I really needed to hear your post today!!! I find today a bit of a downer.. and your good news just helps me think that maybe just maybe I can keep going too! I am happy for you and just love your spirit and spunk!!
Tammy

Re: These SE's are no JOKE!
 

Jessica, you totally rock, woman! You kick that cancer-s#*+ back to hell where it belongs! Glad to hear you rads worked and you are hanging tight.

Re: These SE's are no JOKE!
 

Well Poo! Sorry to hear about the rotten side effects. But I am happy to hear that you seem to be kicking cancer's butt.