Progression. :(

[dawny]

Hi all
I am stage 1V from diagnoses, nearly 2 years ago. I had Abraxane with Herceptin, and they led me to dance with NED. Then another lump was found, and I had a lumpectomy and axillary node dissection, and DCIS was also found. I continued on Herceptin only. A node in my chest then came back, and we watched and waited, still only on Herceptin. Now it has doubled in size from 1cm to 2 cms,and another has appeared. My onc thinks I should wait longer before restarting chemo, as I have good QOL, with few s/e from Herceptin. She would like to wait another 3 months and see then, if the spots have grown significantly. She also said she understood if I wanted to act on it sooner rather than later. She mentioned a TDM1 trial starting in Melbourne (which is about an hours drive from where I live) In Australia TDM1/Kadcyla is still only in trial stages. She stated that this may be my only chance at receiving TDM1 (EVER) as it will be years before it is available to all here. I am thinking that I will go for the trial, as soon as I can get on. Does anyone have any thoughts on this, or advice?

I realize as Stage 1V that I am very fortunate to have had a chemo break for so long, but am still saddened at the thought of progression and returning to chemo.

I think I need to use one of Denise's voices to help out! Lol

Dawn xx

[Jackie07]

Hi Dawn,

Below is a posting by Barbara H. about her experience on T-DM1 (posted on the 'T-DM1 approved' thread in February):

I jumped for joy when I heard this news. I believe that I was one of the first to be given this drug on this website. It was truly a miracle drug for me. I was on a stage one trial and received it weekly at a higher does than is currently given. I started the trial in Sept. 2007. It put me into remission. I remain in remission but had to go off it after two years because I developed lung inflammation. I then received herceptin with Tykerb and continue to be remission. At one point my insurance refused to cover the Tykerb, but my oncologist was able to convince them to allow me to continue this combination. Sheila was also very helpful at the time and I will never forget her kindness. I am enclosing my first post after my first infusion. For those who are interested, you can go to my history.
Kind regards,
Barbara H.
Post from Sept. 2007
Trial Trastuzumab-MCC-DM1 (I think it's working)
Hi Everyone,
I just wanted to give an update of the trial I am on. I posted it on the trial section, but thought that some members might not read it there and decided to add it to this forum. I just received my second infusion last Thursday. I had been off all treatment since the end of May because you have to be off treatment for four weeks to qualify. Unfortunately, as a result of no treatment, my bone mets had really started to grow and become painful. By August it became very difficult for me to sleep. In fact, one night the week before I started the trial, I only had two hours of sleep before getting up and going to school. This was all due to pain. No pain relievers would help and prescription pain relievers make me nauseous. In reality, I had been off chemo other than Herceptin since November when I had to have brain surgery due to necrosis. I really felt as if I was in bad shape and was desperate to begin this trial

My first infusion took all day. The needed blood work, consultations, and the infusion took 1 and 1/2 hours. Then I needed to be observed for four hours with constant temperature and blood pressure monitoring. After a final blood test I could leave, but had to return on Friday, Saturday, and Sunday for additional blood tests. This is a problem for me because I have bad veins and the trial protocol will not allow blood tests from my port.

During my first infusion my nose started running and I felt quite achy. Unfortunately, that night I had to give a speech and meet will my parents at Curriculum Night. It was difficult, but I did it. The next day I felt pretty awful, but went to school. By that evening I had a fever of 101F. At first I thought is was a reaction to the new drug, but now I think I caught a virus from my students. Three were out that week with colds and fevers, and by the beginning of the past week two of the other third grade teachers had it. I probably will never know for sure.

This past Thursday I had my second infusion and it was quite uneventful. The following day I was tired, but went to see "Wicked" that night with no problem.

Here is the good news. By the second night after the first infusion I was able to sleep with virtually no pain. After being in pain for two months, this feels like a true miracle to me. My hip is still sore during the day and I favor it somewhat, but I feel that this treatment is quickly making a huge difference. It is also very easy to tolerate. Therefore, if you are looking for a treatment option, I would definitely investigate this trial. I also wonder if there is anyone else on this website how is taking this drug.

I will continue to give updates, and will know more after I have my scans later this month.

I give my best to everyone. I have read everyone's posts, but just haven't had time to respond. The beginning of the school year is always very hectic.

Best regards,
Barbara H.

[Jackie07]

Another thread with shared information on T-DM1:

http://her2support.org/vbulletin/showthread.php?t=53082&highlight=T-DM%21

[dawny]

Thank you Jackie, I will read through those threads now, thx for your help. Xx

[NEDenise]

Dawn...
Well that suck! But definitely not as badly as it could...so there's our silver lining!

If you're looking for unsolicited advice...and really, who isn't...go for the TDM-1! If you try it, and you hate it...ou can always stop. If you let the chance slip by...you may kick yourself later.

Now...the "voice du jour"...let's see...maybe a female voice today...oooh...my Great-Aunt Helen...sweetest lady ever, but she could talk the ears off a doorknob, and man did she love to clean up messes. That edema will be scurrying away...and she'll use the extra fluid to polish up my scalp!

Keep us posted about what you decide!
Denise

[dawny]

Thanks Denise, you can always make me laugh!

You are right, a trial doesn't mean I am stuck on it forever, does it? I am not sure what the paperwork involves, surely it would be our decision to opt out if we choose.

I think TDMI have a relationship brewing .....

Dawn xx

[mamacze]

Hi Dawn,
It sounds like you are going to jump into it with TDM1 - I loved reading all the comments from our sisters - and I am still chuckling from Denise....I really have nothing to add other than I wanted to chime in some encouragement and hope that you keep us posted.
Love Kim (from CT)

[Kellennea]

Sending hugs :)

[Mandamoo]

I am so sorry to hear this though pleased it is not a major progression. I can understand your reticence.

It is a pity that we cant access dual treatment like Hercptin and Tykerb here - is there any chance your onc would consider approaching Glaxo re: access to Tykerb? There are ways in and around the system and I believe at some point you would be able to get TDM1 if you wanted it but currently you would have to be heavily pretreated to get compassionate access (and you are not).

I would seriously consider the trial - is it 3 weekly? It could be just the thing for you - Herceptin obviously holds things pretty well for you so adding the chemo to it would probably be a great option for you.
What is the trial and how does it work? Is there a control arm? TDM1 is very doable - I wish it had worked for me and am still bummed it didn't... I know if I were you I would be jumping on the opportunity to get TDM1.
Good luck with deciding.
Ax

[Pamelamary]

Hi Dawn,
Sorry to hear your news. At least travelling from Geelong won't be made more difficult by the treatment, as TDM1 is relatively easy to take. There have been so many good results, so go for it!
Best wishes.... Pam

[Bunty]

Oh Dawn, just read your post. Sorry your good run has hit a hurdle, but as Amanda says, it's not too major a recurrence. I know that's probably little comfort at the moment....

I agree that getting on the TDM-1 trial would be good, and as you say, we don't know when it will be approved here in Australia yet, so trial is probably only option.

You had a good response with Abraxane however, as I did the first time I had it from June 2011 to November 2011. I had a good year of stability, and then found the single liver met growing again (lung tumours still no change). We decided to try Abraxane again, which I started in late January, and first scan results show that it's working again, with the liver met reduced after three cycles by a third, and TM's dropping continually. So you could consider trying Abraxane again..... I know we are all different, but it is apparently synergistic with Herceptin, so could help kick it back into action.

Best wishes and hugs for your next step....

Love Marie x

['lizbeth]

I think the TDM1 is a great option. Compared to disease progression and chemo, a much better scenario.

Good luck and good health!

[jellybean]

I agree that you should go for the T-DM1.

[Patb]

Just my opinion but go quickly and do all you can now.
My friends have driven two hours for three years and
are doing well. Best of luck and my prayers.
patb

[dawny]

Thank you everyone, I am starting the TDM-1 trial on 29th April. I was the last accepted out of only four places, so I am feeling very lucky to have a chance on the trial. Fingers crossed for good results

I appreciate everyone's thoughts and support
Dawn xx

[NEDenise]

Yay Dawn!
So glad you won the TDM-1 Lottery!
Couldn't have happened to a more deserving gal!

Fingers crossed for wonderful things to start happening on the 29th!
Love across the miles...and a big hug
Denise

[caya]

Congrats on being accepted into the trial, Dawn.
I hope TDM1 is the magic bullet for you.

Sending prayers and hugs from Canada.

all the best
caya

[Pray]

I'm so sorry to hear of your progression and praying ever so hard to hear that tdm1 is working. Gods blessings to you and your family.

Peace my friend,

Nancy

[KsGal]

Congratulations! Lets hope the TDM1 is your magic bullet, like it has been for many of our sisters. Sending lots of love, prayers and positive light! Please keep us updated on how the trial is going.

[phil]

Those who know me on here know I am a Big Fan of t dm-1 . it has been a wonderful life saver and great QOL drug for my wife, Lorraine. check out our website, at stageivsurvivor.webs.com . Since Nov., 2010, 34 doses, ned since Nov, 2011. it is imp. to remember that it is NOT a cure-all for everyone, but a no. of pts are doing very well 2 - 4 yrs out , and they were late stage iv, lots of mets, lots of tx's. I am excited to see what it will do with folks who are newer in the stage iv battle.
Our next hurdle is 4 month scans on Wed., keep us in your prayers . you are in ours.

[dawny]

Thanks everyone

My first dose of TDM1 was a little harder than I expected, it seems everyone is saying it is so much easier than most other chemos. I think I must just be a sookie la la (medical term of course!) I had terrible headaches, nausea and had to nap for approx 3 hours each day at lunchtime, just to get me through to an "acceptable" bedtime. In saying that, at 8 days out now, I am feeling really good! Must be the chocolate I just had.

Phil, I have been following Lorraine's story, and I thank you for your good wishes, which I also send back to yourself and Lorraine. I would also like to thank you for the hard work and effort that goes into all that you do, it benefits us all with breast cancer.

Dawn xxx

[NEDenise]

Dawn...or do you still prefer Sookie la la? :)

So, how are things going with you and your tawdry relationship with TDM-1?
Any improvement in the days that follow each treatment?

Any scans scheduled yet? Nah, probably too soon for that, huh?
Denise

[dawny]

Lol Denise

My last post about my muga scan going down from 67 to 50, was all a big fib! The STUDENT, told me that, but on treatment day the onc said there was no problem, it was at 65! So all that stress and worry that I would get kicked off the trial was in vain. What is the saying girls. DONT BORROW TROUBLE!

So I had my 2nd cycle of TDM1, and it was easier than the first. I changed anti nausea tabs, so I think that was the main reason. So I wasn't as big a sookie la la as the last cycle!

Thanks for checking on me Denise, it's nice to know
Dawn. Xxx

[Mandamoo]

Glad the second one was better - I found the first the worst. Are you at Footscray for this trial? I have a friend starting next week. I don't think it is as easy as everyone says but the big thing for me was that my bloods were totally normal throughout and that's a good thing. Here's to it doing its job and so pleased the echo was a furphy - Don't borrow trouble - YES I like that!

[dawny]

Amanda, I am at Peter Mac for the trial. Peter Mac was a shock to the system. I was at St. John of God, private hospital in Geelong. The only option they gave me was Peter Mac, so I went from a small hospital where all the nurses know not only your name, but also your husbands, children's, where they go to school etc, to huge overcrowded, awful Peter Mac. They are building a new hospital, but that is about 4 years away. I was horrified as I walked through a corridor to have a muga, that there were people who had just come in ambulances, on trolleys,nwith oxygen I.v, etc just abondaned in the hallway, also it looked as though some patients had just come out of surgery, hospital gowns open, but no curtains, no privacy, it made me feell ill to see these people in a time of need, look as though they had been discarded into a corridor/room, without a thought. My nurse said the hospital had a policy of not turning anyone away, and are therefore 30% over their patient limit. The nurses are rushed off their feet, working extra long hours, I am afraid that mistakes will be made in that kind of environment.

Sorry, that turned into a bit of a rant didn't it? I hope your friend does well (and that Footscray is nicer! Lol)

Dawn. Xx

[Mandamoo]

I've never been to Peter Mac but was at Morabbin for one trial - quite a difference to Cabrini and Frankston Private. Just soooooo busy bt I have to say that even at Morabbin they got to know me by name. I think you get a little more TLC when you are on a trial too.
It's crazy in the public system and I am grateful I am currently at Cabrini but I am glad we have a system that keeps accepting people I just wish it were better funded.
xx

[dawny]

Yes, I agree Amanda, I am glad Peter Mac keeps accepting people, but they definitely need more funding to treat said people. There just never seems to be enough money in the health system, does there?
I am online booking a holiday to Byron Bay at the moment. I find it hard to plan too far ahead, but I am going ahead and booking in October. Can't put everything on hold for stupid cancer.
Dawn xx