TDM-1 news

[fullofbeans]

I have received my first dose last week, Thursday. Yeah!! I have been feeling so much more at peace ever since.

Initially I did not have any side effects. But my platelets have crashed (grade 3 toxicity) so I was unable to do the angioplasty procedure planned yesterday that could potentially help with my puffed up face (planned for next Wednesday so ok about that) they want my platelet to naturally come back up. I have also felt tired but it is hard to tell after all the heparin tribulation/randomisation if I was simply mentally exhausted. I also have had headache. But he ho it will pass.

I am having more problem breathing now tho that I did last week and new pain spot in the lungs (on the back) . I know that my lungs is full of tumours more than 20 with some over 5cm.. but I am hoping that the pain is perhaps it is a good sign as oppose to just things progressing fast. They are perhaps squealing right??

I have started 2 weeks ago a super healthy delicious veg raw food diet (+fish) and I feel better for it, much better. I think the miso I use daily now helped with my oetrogen level too (I am ER- but on menopause). I even got myself a dehydrator: going serious again with it! and enjoying it. I have experienced with it in the past initially when diagnosed.

I will have my first scan in 6 weeks but until then I am feeing quite at peace and continue planning for the summer and getting into my gardening.

[NEDenise]

FOB,
I think you're right...I can hear the cancer beastie's death screams all the way across the ocean! TDM1 is 'da bomb'!

Hope the side effects aren't too troublesome...rest, and get your strength back...let the drugs do the hard work!

Thinking of you and praying for good things!
Denise

[schoolteacher]

FOB,

Yeah! I am so glad you got the drug last week. Hope your headache is gone. I am saying the cancer is screaming from the treatment. It is raining in Georgia today.

Amelia

[Ellie F]

Hi FOB
So glad you got T-DM1 and now I want it to get rid of all those nasty cells and be your magic bullet.

Ellie

[ElaineM]

I am so glad you got T DM1. Hear me clapping half way around the world ??
Maybe some of the T DM1 gals will chime in and share their experiences with you.

[StephN]

Dear K -
VERY happy to hear that you have prevailed with this trial!
I can hear your sigh of relief with that post. some pain with treatment is normal, especially with mets. Remember that the DM1 in your drug is a mean sister compared to the T. And the tumors are getting hit inside the cells.

Your idea to keep on with your summer plans is a good one, but you have to be close to your treatment center in any case.

Hope the spring weather is also helping to cheer you up, as well as your puppy. Cyberhugs to you.

[7andcounting]

Full of beans, so very happy for you to be getting TDM1. Hoping this is your magic bullet.

[caya]

Very happy for you FOB. You are one great Warrior Woman!

all the best
caya

[Mandamoo]

Go for it FOB!
Hope that things improve quickly. :-)

[Jean]

FOB - great news....so happy to hear that you have started the TDM1 treatment. Sending you healing vibes and I think you should start a veggie cookbook!

jean

[fullofbeans]

Thank you so much about the encouragement.

I have been feeling a bit better and today it may sound anodyne but I sneezed which 3 days ago I had suddenly lost the ability to do because my lung would not expand enough and was afraid it meant progression. So many thing it could have been from a small pulmonary embolism (had all the signs but with platelet at 25 what could they have done anyway) to small lung collapse (could hear some sound nothing can be done) or even a bloated stomach pressing on a lung scar..all are better than prog.. these things than can resort themselves..fed up of being scanned and hospitals so I let nature takes its course..

and I am a bit better already so the plan:

1-So hopefully get my face sorted soon (once my platelets are up)
2-See some really improvement after next TDM1 IV (in my breathing)
3-Camper in the UK for the moment
4-Go to my best friend wedding in Turkey (very ambitious plan)
5-Write a "un"cook book as Jean suggest!! I have been thinking of organising raw meals at the cancer charity close to me.

[Ceesun]

FOB, Consider me another happy, happy camper for you! All the best with TDM1 and that "to-do list," too! Ceesun

[Mtngrl]

FOB--

Thanks for keeping us posted. I'm pulling for you!

I bet the pain is because of apoptosis, one of my favorite cancer words (not that there are many). Here's to your health.

Sending love.

[Joan M]

Great news about getting into the T-DM1 arm of the trail!! Go for it!! Joan

[phil]

Congrats FOB !! Did we talk about the platelet issue before ? Lorraines dropped from the beginning, from over 200,000 at start to about 90,000 after 3-4 doses at 3.6 strength. She got 3 more doses at that strength , total of 7. In Hindsight probably should have cut back a bit earlier , after 4-5, depending on plat level. But we didnt know , went on, and plats went to 40,000 after 7 doses. ( had a sepsis issue from old stents in April, 2011, , but that was a unique problem , did drop her plats to 29,000, briefly. didnt help, but speaks to these steps as having good results to come back from there. ) Switched to 3.0 ( every 3 weeks ). And barely hung on , but plats gradually rose starting last July , to 80,000 last week. In May, Lorraine started diet changes sharks liver oil, chlorophyll at health food store, 1,000 mg folic acid, green leafy veggies, spinach , sweet potato, good quality red meat 7 days , and 4 days prior to tx. ( plats have a life in body of 6-8 days ). We favor Porterhous e steak asit has fat in it, roast beef. If your bone marrow is under attack, you have to be a bit of a cavewoman ! Brisk 15' walk just before blood draw ( tip from a Gen. doc ), regular light exercise, regular rest . Doc says not having bone mets may have given L. more bone marrow reserve,
l Its working ! Starting 18th month today ! Good luck !

[phil]

Also, lots of excitement over here w/ the Sloan / Farber trial w/ pertuzumab and t dm-1 at low weekly doses ( 2.4 ). Taxol is given at start , but gets dropped after 3 months or so, if theres quick response . Many are having more dramatic results than Lorraine, and she had a quick response. I've heard of NED after amonth or two ! I think pert. / t dm-1 will be the tx choice of the future. low weekly dosing of t dm-1 seems to protect against plat loss.

[Pray]

Gods blessings to you both Fob and Larraine. You and your families are in my prayers.

Peace,

Nancy

[schoolteacher]

Hope to hear from you soon, FOB.

Amelia

[fullofbeans]

Thanks all for the good words. My platelets are on the way back 117 almost 2 weeks after the treatment. Therefore likely to be over 150 by week 3.

Phil how long after the treatment were Lorraine's platelets checked? was that after the 3 weeks prior to the next treatment?

Mine went low 5 days after 1st tdm1 IV but we only found out by accident because of the angioplasty planned procedure.

Having the angiop. this coming Tuesday and really hoping that my face wil be normal again. And surely the fact that more blood will go to the heart as oppose to being pushed to my face will help my body generally and my heart having to pump less.

Good to know that the dose is working at lower level too. I eat plenty of oily fish and veg, I have no doubt that my diet is adequate, if only by the way I feel mentally. 18 months that is nice news to hear, I've always think weekly IV is better: repeat bashing of cancer.. inconvenient but better what ever works

I hope that me and Michka respond to TDM1 too, it is hard to tell between symptoms and everything else going my breathing got worse a week after tdm1 but it seems to have ease up now a bit now or at least it is def not not getting worse since last week. have had blood clot issue so it could have been that.

I had a skin rash coming upon my breast and looked like skin mets but the day after had another patch on my kidney then another patch on my leg with few pimples here and there.. which did not fit the criteria. I was worried )although with eveything that has been happening I was quite calm about it, funny how one adapts) but not anymore. Never heard of skin rash as side effect tho.

That is the news for now next tdm1 next thursday.

[KDR]

FOB,
Things are really going smoothly thus far here. With T-DM1, platelets take a major hit, but rebound quickly. Keep up with a very healthy diet and rest when you need to. The only side effects with the two drugs I am on is fatigue and a little nausea on infusion day, which is easily controlled with a single Zofran or maybe a cup of black tea.

I wish you the absolute best -
Karen

[schoolteacher]

FOB,

Glad to hear from you. Glad your platelets are coming back up.

Amelia

[phil]

Lorraines plats were checked 2 days before each 3 week tx. If they werent up enough, she delayed another 1-3 weeks, which is the limit in the old exp. access protocol. ( 6 weeks total ) Gen clinical team gave her even more extra time after sepsis ( saved her life probably ). And shes cruising on 3.0 every 3 weeks. plats 70,000-80,000 +. She gets a platelet rash , which is achain of red spots on neck, and red bumps on wrist. She also gets little red bumps in various places like FOB describes. Plats that rebound above 100,000 is great in our opinion, we hope L. gets back there someday.
But for all tdm-1'ers , plats need to be watched ., at least 30% have that issue , dropping below 100,000 ( i think maybe even more than 30 % ). below 100, 000 they have to be watched if they dont rebound before next dose . If they didnt rebound over 75,000, that meant another reduction , to 3.0, if they continued to drop, to 2.4 ( which L. narrowly avoided ) below that - you're Dropped from tx !! So, read up on protocol , ask questions !
In L's old protocol , , like many trials , once you go down in dose you cant go back up. Until approval, when we can be done w/ This FDA . Oh, how I want to be done w/ This FDA for ever ! meaning get rid of Pazdur and his tdm-1 " advisors ".

[fullofbeans]

Phil mine are back to 117 after 2 weeks. I would expect them to be normal by next thursday (my next TDM1). I hope Lorraine will get back there, but the drug is working and as far as thing stay like they are all is good.

A phase one trial of TDM1 shows that platelets are lowest in the first 8 daysthe point of nadir.

platelets rash.. now I know what it is from it first appeared on my breast bone just above the sternum scarry.. but yes I looked up and it matches..one more thing elucidated..thanks.

Praying for my platelet to be 150 by Monday so I can have the angio. and get my face back if all goes to plan.

I can understand your dislike for your FDA, in my opinion one of the most openly corrupt governemental organisation of the western world, yet very powerful.

[phil]

I am so happy that you get to try this amazing drug, hers praying for a response even better than Lorraines ! And hers was, and is more and more , pretty amazing !
Watch those plats , as Lorraines went up after each dose , but not as high as the dose before. As i said before, maybe wouldnt have had as low a drop if she had reduced to 3.0 after about 5 -6 3.6 level doses. As plats first dropped below 90,000 around the 5th dose. . But the first scan showed great results , after 3 doses at 3.6 , 7 tumors were reduced to 4. Then plats and sepsis delayed , interrupted doses from around March , 2011 until July. Since then regular 3.0 level doses every 3 weeks steadily reduced cancer to one tumor in Sept, Since Nov, no detectable disease. 20 doses all told, 18 months of stability, great QOL. When its all approved, hope to go to 2.4, maybe w/ pert as well. Good luck !