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Old 02-24-2014, 08:56 AM   #1
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TDM1 Trials - Questions seeking answers

Dear All,

My name is Mandy, I am 28 years old and I live in the UK. Over the past few days I have been reading your posts and I think the sense of community, support and friendship you have all created is incredible and I am hoping today to become a part of that. I am writing to you all today on behalf of my future 'Mummy-In-Law', she is beautiful, very strong, majorly funny, absolutely lovely and extremely special to me and her caring family. She has been fighting hard for the best part of ten years and had plenty of ups and downs along the way.

November 2012 saw the further spread of her HER2 positive Metastatic breast cancer and as a result lead us down the path towards TDM1. We were introduced to a trial upon which she was accepted on to in the summer of last year. She responded brilliantly compared to other conventional forms of chemotherapy, little side effects and a great opportunity for her body to regain some strength.

However, we have hit a hurdle and this is where I would like to ask for your help and advise, as we her family are not prepared to give up this fight. I would like to find out if any of you (or anyone you know) have ever been on a TDM1 trial and withdrawn from this trial for whatever reason and with out being intrusive if any of you (or anyone you know) faced any set backs whilst on the trial that has or has not affected your position to continue on the trial?

My Partner and I are putting together a series of questions that will be presented to the responsible clinical team this week and would very much appreciate any help or advise that you might have!

Thank you very much in advance, I think you are all wonderful!

Mandy xXx
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Old 02-24-2014, 09:13 AM   #2
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Re: TDM1 Trials - Questions seeking answers

my wife has done very well on t dm-1 for over 3 yrs. she is ned. she was on a trial until last month. we left voluntarily to get more flexibiblity . didn't want to to be pushed by trial rules to get tx every 3 weeks. we want more breaks. it would help if u were specific about the hurdle. is it a s/e affecting trial rules ? or a re-ocurence of the cancer . that would be trickier in a trial, altho the fact that u in England are behind us w/ this drug is an issue. the trails for this very effective drug have dragged on for yrs and yrs. ridiculous. we stage ivs' should have more flexibility - to add perjeta to t dm-1 and see if re-occ. is halted . or tykerb.
we have had to fight to stay on the drug since early on, learned to be a " squeaky wheel ". always using the ' response card ", we are getting good response , in our case ned , or in other pts stability , so we pushed to stay on . first it was low platelets , aggravated by sepsis related to old stents put in from previous cancer that t dm-1 wiped out. so we argued for extra time, arguing that sepsis aggravated plat. issue. and they gave it . we reduced dose to 3.0, but fought lowering it any further , based on response. we argued to get drug when plats went below 50,000 even tho trial rules said 75, 000. and we were part of change in rules that allow tx below 50,000. we went to the Press and our pols early on as we had to travel to Wash. DC from Boston to get the drug. see my wife Lorraines ' story at www.stageivsurvivor.webs.com Speak Up for Stage IV Rights !
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Old 02-24-2014, 09:36 AM   #3
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Re: TDM1 Trials - Questions seeking answers

Hello Phil,

Great to speak to you I have read a lot of your posts and I am so happy for you and your wife Lorraine.

I do apologise I should have made myself a lot clearer, the hurdle we face is an increase in the size of one of the nodules in her lungs, its seems incomprehensible that someone should conclude that TDM1 is no longer working based on this and this alone when just 3 weeks things ago things were as good as they could be. Her bloods have been brilliant, we have seen decreases in the sizes of various other nodules and hardly any adverse side affects, this is a strong as I have seen her in 2 years!!!

We want to fight this, but I am new to this. I have never had to face cancer up until now and I want to give this everything I have got because I can't accept that this is the end of the road! We have looked into the harmful effects of radiation giving off during CT scans, could this be a potential reason for the increase in size seeing as she is having to have them every 3rd course...I don't know!

Thank you so much your response!
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Old 02-24-2014, 10:41 AM   #4
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Re: TDM1 Trials - Questions seeking answers

Hello Mandy. I read that Kadcyla (TDM1) was announced in the UK this month. This should allow you more flexibility to discuss with the oncologists. Maybe you can ask for a re-scan in 2 weeks? Just to check and have time to think.
How big is the nodule and how much did they say it grew?
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 02-24-2014, 12:38 PM   #5
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Re: TDM1 Trials - Questions seeking answers

Hello Michka,

Thank you for your response.

Yes you are correct TDM1 will be funded by the National Cancer Drugs Fund, so we will definitely ask the question with the oncologist.

It is just so sudden to have gone from everything being as good as they can be to being withdrawn from the trial! I believe there has been a 6mm increase. There has been no mention of observation, no discussion of further investigation basically that this is the end of the road!

I would like to find if anyone on the trial had to declare that they had exhausted all other forms of treatment in order to be accepted?

Once again thank you for your responses and getting back to me so quickly

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Old 02-24-2014, 07:20 PM   #6
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Re: TDM1 Trials - Questions seeking answers

I want to correct some info I gave above. we advocated for L. to get the drug if plats were below 75,000 but above 50,000.
I would argue for more time to observe that nodule , continuing to get drug, and if the drug has been appr. by your Board in England then I hope your doc can continue to give it , even if you leave the trial . I don't kow why your mothers docs are talking about " end of the road " . some pts have stopped it here for s/e and still continued to benefit. they continue on combos like Herceptin/ navelbine or Herceptin / tykerb. it seems as if t dm-1 weakened the cancer and these less strong combos seem more effective as a result. pts here are saying adding perjeta to t dm-1 increases its effectiveness. I don't know if its available there.
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Old 09-25-2014, 04:48 PM   #7
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Re: TDM1 Trials - Questions seeking answers

My recommendation would be to contact Genentech, one of the manufacturers of TDM1
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breast cancer, cancer, her2, tdm1, trial

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