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-   -   my tdm1 scan.. (https://her2support.org/vbulletin/showthread.php?t=54625)

fullofbeans 06-04-2012 03:32 AM

my tdm1 scan..
 
what can i say better than the fast growth I had before.. there are still tumours growing some slightly regressing and some stable. No new tumours it seems.

Compared to my scan in March showing very fast growth and new tumours within 2 weeks before tdm1 this is good..but the fact that they are some still growing may say that some are resistant.. and this is making me cry as I write this. Things could be worse, but they could be better..

Can this be changing on the next scan? has anyone had some tumours that continued initially to grow then stopped after more tdm1?

JennyB 06-04-2012 04:22 AM

Re: my tdm1 scan..
 
Full of Beans,

I'm sorry I can't offer any insight but I can send you lots of love and hope your next scans show results that make you cry happy tears not sad ones!

many hugs

Jenny xx

sarah 06-04-2012 10:20 AM

Re: my tdm1 scan..
 
Hello,
I don't know the answer but perhaps the treatment takes a while to add up enough to work at full force. Your oncologist should know the answer. Take care, fingers crossed that the next scans show good shrinkage.
hugs and love
sarah

yanyan 06-04-2012 11:06 AM

Re: my tdm1 scan..
 
I agree with Sarah it takes time for the drugs to work at full force ! I hope your next scan will have even better news than this one! Don't lose hope !

Pray 06-04-2012 11:07 AM

Re: my tdm1 scan..
 
I am hoping and praying for better results for you on next scan. Peace

NEDenise 06-04-2012 06:54 PM

Re: my tdm1 scan..
 
FOB,
I don't have any experience or wisdom to offer...but I wanted to let you know that I'm thinking of you...and praying for you.
Sending a warm hug through cyberspace!
Denise

chrisy 06-05-2012 05:24 PM

Re: my tdm1 scan..
 
I'd take it as a good sign. Tdm1 can take some time to kick in, and it seems like you have mostly good news there. If I read your post correctly,you had a scan 2 weeks prior to starting tdm1 , right? The scan showed fast growth and new tumors. Then you have a 2 week period in between where you don't know what was happening. Probably some growth,right? This may be what is showing on the new scan.

TDM1 got me to NED, fairly quickly but still, not overnight. It sounds to me that possibly the cancer has been slowed considerably and maybe even stopped in its tracks...on the way to being being turned around. Give it a chance and definitely don't lose faith. It is a great drug. Sometimes it just takes time.

fullofbeans 06-06-2012 09:06 AM

Re: my tdm1 scan..
 
Thank you all for your kind words. Gosh Chrissy, you are really an optimistic person and I admire that in you. .. but I hope that you are right

I also received a personal mail from someone who warned me that they experienced the same type of results than me and the next scan was progression adn they wanted to warn me to gain time and look for something else now.. Which I should do really..but option are limited.

I like your mail chrissy read it straight after the personal message, even if I think it is wishfull thinking.. but you never know indeed. I really hope that you are right

Ellie F 06-06-2012 09:52 AM

Re: my tdm1 scan..
 
Fob
Can you add pertuzumab to it? Don't know if that's available here yet?

Ellie

fullofbeans 06-06-2012 10:54 AM

Re: my tdm1 scan..
 
How would I do that??? unfortunately tdm1 is on trial end of story nothing can be added to it..

pertuzumab wll not be available here for a long time anyway remember that tykerb is still nt on the NHS!

StephN 06-06-2012 12:23 PM

Re: my tdm1 scan..
 
Hey K -

I am on the same page as Chrisy, that you had a good amount of disease to deal with. "Nothing new" is a wonderful sign after what you reported just prior to starting the drug!

Do what you do best - stick to your good diet, walk your puppy, and keep up the positive affirmations directing that drug to work where you tell it to.

As for the PM you got, there is always a chance something will stop working, but this is way too soon to be thinking that way. Besides, knowing you, you are on the ball with anything else you could do.

Rolepaul 06-06-2012 12:52 PM

Re: my tdm1 scan..
 
TDM-1 uses Herceptin to target and Mayastine to kill the cells. It can take up to 28 days for the drug to take effect as that is the regeneration time for many of the body's cells. Think of the menstrual cycle, although I had never considerred that until I just typed the previous line. Nina took four to six weeks before the scans cleared up. If there was a general slowing, you are headed down the right path.
Keep up your spirits. There is positive results that indicate you are on the right track.

Sheila 06-06-2012 03:23 PM

Re: my tdm1 scan..
 
Hoping you will see improve,ent by the next scans....I was very disappointed to be liven the boot from the TDM trial because although I had shrinkage in some areas, a few did not improve and after I think only 3 rounds, I was taken off TDM1.. I truly think if I had stayed on it, I would have been successful....also spe trial add Pertuzamab to the TDM1 if there is progression on the TDM1... Seems that combo is very successful

Listen to Chris..she is truly the TDM1 poster girl.Keeping you in my prayers for shrinkage'!!!!!!!!

fullofbeans 06-07-2012 04:06 AM

Re: my tdm1 scan..
 
Thank you again for the above posts.. you are right i should not despair now and wait and see, Steph always the right words. My face has gotten bigger too (veins/nodes being blocked by cancer ect..) it's hard to look in the mirror, but I will focus on your good words of hope and hang on to them, thanks friends.

K xox

Ellie F 06-07-2012 10:13 AM

Re: my tdm1 scan..
 
Fob
My onc reckons NICE will approve pertuzumab quickly especially as both the states and the EU are poised that way. He feels the data supports the approval of this in advance of T-DM1 so hopefully its on the way.
I mentioned adding it or changing to open up more options. I understand how frustrating it is not to be able to get things that are available elsewhere and totally agree about lapatinib only being available in certain situations.
Hugs and best thoughts as usual
Your fellow frustrated Brit!
Ellie

Rolepaul 06-07-2012 10:35 AM

Re: my tdm1 scan..
 
Thoughts are with all the fighters out there. You might feel you are doing much, but even horses run away from fire ants. Keep up the discussions, learning, and sharing.

chrisy 06-07-2012 10:44 AM

Re: my tdm1 scan..
 
Fire ants. I like that.


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