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On Long Island (NY) I had two additional oncologist's. One in Manhattan. One in Westchester. Both requested I bring CTs to them for their radiologists to review.

This was 1999. All my many CTs were STABLE showing same tumors in liver. I had multiple tumors throughout liver too many to count from the getgo. So what they saw was what remained. After Taxotere 9 mnths and Herceptin 7 months at that time.

I got copies of MY Ct's which we all have a right to, from the Imaging Center and I subsequently collected copies after every CT (waiting back in waiting room for 10 minutes to get them).

I took the CTs to both oncs who each had their radiologist read them.

Both independent radiologists who did not know each other (one in Manhattan with Mt. Sinai), one in Westchester with radiologist previously from Sloan Kettering) -- said the same thing.

WHAT I AM LOOKING AT IS NOT TUMORS. THEY LOOK MORE LIKE NECROTIC TISSUE. THEY ARE CYST-LIKE, FILLED WITH FLUID.

Both radiologists said -- I WAS STABLE WITH NO EVIDENCE OF DISEASE.

From that moment on I decided to listen to radiologist #2 and #3.

I have remained STABLE WITH NO EVIDENCE OF DISEASE SINCE APRIL OF 1999.

I remained on Herceptin till 2008.

Been off tx since.

Still STABLE.

Still happy.

I would have insisted on a biopsy before tx. It is our right.

I see you write you have no choice and I remember thinking when I first saw you write those words it didn't sit well with me.

Forgive me for being blunt, but we always have a choice. We are talking about our body and our life !

I informed my oncs that I was a part of the team. I was a part of the decision making.

I was moved to say that because one onc had made a decision to give me more Taxotere than the stated, conventional protocol at the time (1998/1999).

I also had a Florida onc. I spent half the time on Long Island and half the time in Boca. I carried a FLOW SHEET from onc to onc, to keep everyone on the same page.

When I got to Boca Dec of 1998 I felt like total crap. I could barely walk (I shuffled and kept tripped as I couldn't lift my leg/foot enough to clear the floor) and I could barely speak above a whisper.

I had a pleural effusion and a peri cardial effusion from the Taxotere among many awful side effects that were painful and debilitiating.

My Boca onc looked at the flow sheet and said OH NO WONDER YOU FEEL AS YOU DO. YOU HAD AN EXTRA WEEK OF TAXOTERE THAT YOU WEREN'T SUPPOSED TO HAVE. NO BODY CAN TAKE THAT MUCH TAXOTERE.

When I got home I called my very much loved Long Island onc and was told by his nurse that well DOCTOR DECIDED YOU WERE DOING SO WELL (WITH SHRINKAGE) THAT HE WOULD GIVE YOU AN EXTRA WEEK.

That should have been discussed !! Well, it was the doctor's decision.

NO. NO. NO. I am a part of the decision making panel. I am on the team !!

And I made that clear to all my oncs. As I say, we were talking about my body and my life. I may have chosen or been persuaded to do the same thing but I should have been given the choice.

That's my take.

I don't mean to be blunt or rude. Forgive me if I sound it. But I feel passionately about this. And yes, I am outspoken. I feel it's my responsibility to share what I've learned with friends. That's what good friends do. Hell, I would share my thoughts with strangers. You can always ignore me. Just hear me out.

I love you, Juls, and I love you all.

I am always on YOUR side! Always !!

Hugs to all,
Andi

Hi Andi
Thanks for your reply.

As you know I was not happy with decision (re Xeloda & Zometa) last year when bone met found & told Onc so. I felt the decision was made without me being included & I was never 100% that Xeloda was right for me! I felt that as I am high Er+ & Pr+ that this was not being treated -Xeloda and an AI can't be given together (I did take it for 12 months. Liver met re-grew in same place over last 11 weeks.) It was just a gut reaction it wasn't right for me. I know it works for many others. They offered nothing else and I felt I had no option but to take it.
Yet here I am again - walking into ward 3 weeks ago unaware CT showed progression & not knowing that they had already had a meeting regarding my treatment. Nurse looking uncomfortable and telling me she didn't know whether to call and tell me over the phone priot to my appt. because we had never discussed protocol. Rubbish - she has called numerous times! This trial was only option given. Yes - I did ask for other options! Both Oncologists saying that this is best option. My current Onc mentioned an AI to tide me over until after my Daughters wedding and then they would look at me again (Guessing it would be another chemo) but trial would then be closed..This trial includes Kadcyla and this is only way to get it here. Apparently the drugs available in my area are getting less and less mainly due to cost. Even if they apply to Health Board for Kadcyla outwith trial I have a 99% chance of not getting it. So seems pointless.
I got a call today re Ct and Echo - got appt. for tomorrow 1st thing. Got them to add on blood tests as well to save a double journey. Doesn't look like I will start this week - more likely next Thursday. If I don't carry this PD ligand(?) not sure what will happen.

This Phase 2 trial is only allowing about 200 worldwide & it closes in a few weeks. If I do any kind of treatment (AI,Ablation,chemo etc.) or if I delay I am excluded. So between a rock and a hard place!!"
Trial is an immunotherapy drug ( 2 in 3 chance of getting it) and Kadcyla ( all patients get it)
Will update when I get any other info.
Re - Biopsy - not needed at moment for trial. I asked for ablation but told no as I would be excluded from trial plus new Onc. doesn't believe in ablation.
Is it just me!!
Juls

Had Ct and Echo today.
Heart fine!
CT - got to wait for report. Normally CT scan is of chest,abdomen and pelvis. Today it also included head. Never had that before & wish I had been told in advance.

Met new Nurse for 1st time. Trial blood tests and ECG done. Found out that the 1st patient on trial started last week & already another 4/5 being considered.
I asked if she knew of any options if I didn't get on this trial. Her reply was another chemo!
Did find out that tumour test back and results good for trial.
The downside is they say I can't start for another week. Which means 5 weeks since last treatment.

Yesterday I started new immunotherapy drug trial.
Also got CT report -
Brain - OK!
Liver - lesion grown 1.2 cm in a few weeks! A bit concerned about that.
Fortunately only change is in liver and it is in exactly the same spot as 4 years ago.

Thought I was off treatment too long but met another Lady waiting to start same trial who has been off treatment since beginning of January. She can't start trial for another 1 to 2 weeks!

Started at 12 - got out at 5 pm. No idea if given placebo or immuno drug. Had a bit of tightness in forehead and lower back when 1st drug given but that was all.

New oncologist questioned me about right hip as Ct report went into great detail about "hip fracture" Apparently 2 radiologists studied the scan. Had to give him whole scenario of last years panic. That was good enough for him. He couldn't understand how if I had major problem with hip I was not in pain or limping!
So far today- feel fine. Long may it last!
Juls

I’m glad your brain is okay Juls. I have my second brain MRI in a few weeks, and I hope it’s clear!

Sorry to hear that your liver met grew so much in the last few weeks. You’re on treatment now though, and I hope the TDM-1 gets rid of it. Even if you don’t get the immunotherapy drug, at least you’re getting that!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
0/17 – Started to develop severe back pain – worried the cancer has spread to my spine
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
03/17 – Second brain MRI scheduled

Hi All

Have been on this trial with Kadcyla & Tecentriq/or placebo for 6 months.
Liver met reduced to under 7 mm on CT 4 weeks ago.(It was 3.5 cm at start of trial)
Side effects change every cycle but none are terrible.

Hit a problem last week as bilirubin too high and as per trial protocol I was not allowed 10th cycle. Wasn't expecting that!

Oncologist says he is not worried & I've not to worry either!
Next cycle to be in 3 weeks. Would have been happier if it was this week

Has anyone else had this on Kadcyla?

Juls

Jules

Tecentriq is not an anti Her 2 Neu drug. It is a PD1 inhibitor like Kaytruda (pembrolizumab).It can cause immune related side effects like imune related hepatitis, colitis etc. I think the oncologist is just being cautious.

Paul

Hi Paul

Thanks for reply.
You are probably right about oncologist being cautious.

Just read info on immune related hepatitis so would prefer not to go there! I have a 1 in 3 chance of being on Tecentriq.

Think I'll just take the break & hope it clears all side effects so I can get 10th cycle & many more.

Thanks again Paul

Juls

Another long day at hospital.

Only half of blood test came back in morning - the important result (bilirubin) held up in bio-chemistry lab as machinery broke down! 6 hours later told that I could have treatment as bilirubin down to 27. (max allowed is 30 and under)

It seems that the 3 of us on the trial have all hit problems in last 3-6 weeks. We are all on different cycles - 1 on 5th cycle, 1 on 8th and myself on 9th.
1 had treatment withheld for 3 weeks because of severe pain.
1 for inflammation. So she has decided to continue with Kadcyla only & drop trial drug - but remains in the trial!
& me with high bilirubin.

10th cycle received. Fingers crossed.

Anyone-else on this trial?

Juls

Fingers crossed for you, Juls!

Carol Ann

I'm currently on TDM1 and Keytruda. Currently stable

Fingers crossed that things stay good for you, Juls.

Thanks Traci
So far - so good!!

How is H & P going?

Pretty smoothly for the most part. GI issues and the itch they say is not related to Perjeta and is not a neuropathy...even though it follows a nerve up my left arm and across my collar bone. I'll take it though! It's all worth it to keep living and breathing. I am incredibly fortunate to be well and NEAD for two years. Hooray for us!!!

Good to know.
I had H & P on a trial for 20 months. Found it ok to do - but I was the only one not to have the itch! Most of the ladies said once off perjeta - itch stopped!

Juls

Well - this trial is up and down!
I'm off treatment again as bilirubin up. Only plus this time is that if bilirubin under 30 next week I should get treatment.
So far I haven't been to bad but others having inflammation, joint pain and immune system side effects.

Hi Valleygirl
How are you finding TDM-1 and Keytruda?
It seems similar to trial I'm on - TDM-1 & Tecentriq (Targets PDL-1) or placebo

Juls

Praying the Bilirubin is down for your next treatment. That combo sounds a bit rough, but if it is working then worth every discomfort. You are one tough lady!

Hi Laurel
Yes- hope it comes down! Will really be annoyed if it doesn't!
Doctor now wondering if I have naturally higher bilirubin!

Have upped intake of red fruit/veg, water and coffee!
Didn't know that coffee helps bring bilirubin down & here I was trying to be good & cut it down a bit!!

Anybody looking for me I'll be in Costa!

Juls

Have a blast. You deserve a break. I am always thinking of you and all our members in active treatment. I admire the strength of those in trials that push the race for a cure one step closer.