Re: TDM-1 side effects
 

I am now day 4 - yesterday I had a low grade temperature and achy muscles and joints. My appetite was better. Fatigue had me in bed all morning but I was in my garden for a while in the afternoon.

Re: TDM-1 side effects
 

Thank you Lori for bringing this thread to my attention. I read everyone's comments and found the information useful to properly set expectations.
I had my first infusion yesterday around noon at the EAP Stockton site (Dr. Medhi and staff are fabulous.).

I was fine until around 7pm when I crashed. I woke up this morning with a low grade fever, body aches and a headache. I felt lousy all day. Hoping it just means the drug is working.

Re: TDM-1 side effects
 

Nancy, I too pray it is working for you and all the others! Gods blessings to you. I hope your side effects subside quickly!

Re: TDM-1 side effects
 

Hi Nancy and others!

I started t-dm1 last week in Stockton as well. I would have to say my first dose side effects were INTense. I was not expecting this. I've been on the chemo merry go round for years, and this was one of the hardest ever to go through.

I was knocked out for five straight days - today is my first day up. I have mets in the liver - within 2 hours of infusion, it felt like my liver swelled alot, pressed on my stomach and stayed that way until yesterday. So, 4-5 days. Something is still pressing, but not as much.

I was very, very weak - unable to support my own weight. Vertigo at night and am from days 3-5. Strong headaches days 1-5.

I feel much better today, and too hope this is a good sign. I haven't heard of anyone having s/e's like this on tdm1. I will let the trial people know - but wanted to ask here as well.

I, too, felt like it means it working. For me, it felt like I had literally ingested a poison with this first dose of tdm-1.

Did anyone else get any s/e's close to this?

Thanks -

Kim

Re: TDM-1 side effects
 

Hi, Kim!
Wow, it's been a while since we spoke, am sorry that over these last few weeks, never had the chance to give you the time you deserved via phone. So, you're on T-DM1! Congratulations!
I think the platelet wipe is hard, liver mets feel like they are being attacked (and they are), neuropathy...that's my story with T-DM1. This weekend I had swelling in the forearm and couldn't do a 1/4 turn either way.
I never had headaches. Are you on every third week? I go weekly. Any chance you could do that? Either way it's a lot of medicine to take.
Wishing you well, keep those healing vibes alive,
Karen

Re: TDM-1 side effects
 

The chemo delivered in T-DM1 is very toxic. This article explains it.
http://www.usatoday.com/news/health/...pOY92Eo.mailto

So I guess a few have lucked out with only a few minor side effects---good for them! And then there is the rest of us. I am into day 4 and feeling better but still in bed. I do think the pain in my shoulder is down. Hope it is the drug working and not my imagination.

Re: TDM-1 side effects
 

Hi Kim - my response was not so intense. I am day 6 now. Crashed with extreme tiredness within hours of the first infusion, no appetite slight nausea and headache. Day 2 - very lethargic, headache. Day 3 - crashed with fatigue, headache, low grade temp, muscle aches. Day 4 headache and aches but up and about - low temp at night. Day 5 - pretty good but still taking paracetamol for aches in joints and muscles and headache, afternoon rest. Day 6 - so far so good - don't feel normal (!) but ok so far.
I have lung mets - I've felt nothing alarming but have had slight chest heaviness but I also have a viral infection so who knows?
I hope the next one is better for you.

Re: TDM-1 side effects
 

I noticed my link did not copy correctly. Sorry about that. Just google "what chemo is delivered in T-DM1" if you are interested in the article.

Re: TDM-1 side effects
 

Nancy,
I do know one thing: the chemo in T-DM1 was shelved many years ago for being too toxic to give alone.
Thanks for posting.
Karen

Re: TDM-1 side effects
 

Kim (Radiant) I had what you described. Extreme extreme fatigue (I could not get up), bad nausea the first days, pain in the abdomen and in the thorax, headaches the first days...I am now at the 8th dose. The pain in the abdomen and liver disappeared after 2 or 3 infusions. I am not exhausted anymore. Just tried. I still have the heavy chest pressure and other problems BUT many mets are not visible anymore on the scans. So I believe that the terrible exhaustion and the pain was due to the cancer cells dying but it is my own interpretation. The Drs just noted things down. So hang on. After a few infusions it may improve a lot and what I hope is that at your next scan you will see the mets shrinking in your liver.

I am adding a question
My blood pressure is rising ans is now high. The cardiologist wanted me to start a treatment but the oncs asked me to wait. I am very worried about that. Did anybody see their blood pressure raise with TDM1?

Re: TDM-1 side effects
 

Hi everyone!

Thanks for your responses. Michka - I am very grateful to
hear that u had similar s/e's. I was thinking it must be working
to feel this bad, since it's targeted.

I am SO glad to hear this is really working for you. Yesterday
I could get out of bed. Now it feels like bombs went off in
my abdomen area, and that there are holes in some places -
like my liver that my body is working OT to repair. My stomach
area is still swollen and sore. I'm sure thIs means it is
working.

Michka - I saw high bp was a side effect in 10% of folks. I
got bad high bp after being on Avastin for 18 months. I am
now using an essential oil blend to help with my bp - it's working. Plz
PM me if u want to learn more. France is a Mecca for using
essential oils medicinally.

Thanks everyone -

Kim

Re: TDM-1 side effects
 

Not sure if this needs to be just an update on Barb or an addition to TDM-1 side effects. Barb has had two treatments the last on the 18th of Sept. By the 20th she was running a fever of 103.5 and finding it difficult to breath. We ended up in the emergency room where they diagnosed her with pneumonia and plueral effusion. I've read where pneumonia can be a side effect, has anyone else experienced this. Shes had 11 days of oral antibiotics (Levaquin) as well as three infusions of Vancomycin early last week. All appeared well untill we decided to take a short trip to the coast this past weekend her fever returned along with a persistent cough so we returned home and had her at the doctors office Monday where the started another round of the Vancomycin. Hopefully the fever leaves before her next scheduled treatment next Tuesday. So I guess were not sure if this is helpfull for you TDM-1ers out there.

Re: TDM-1 side effects
 

Hi,
Sounds like the pneumonia might be an aside from the T-DM1. Of course, I'm not a doctor, but we also have life's general ailments. Hope Barb is feeling better.
Karen

Re: TDM-1 side effects
 

I am now a week post my second dose. My bloods were fine. Second dose a week ago and this time no fever - just mild joint pain and fatigue and some nausea on day 2.
I'm not sure though how it is working. I have an asthmatic type of cough which I am not sure is post viral (I've had an upper respiratory tract infection) or the lung mets progressing. Progress scan on the 29th - hoping for a stable result.

Re: TDM-1 side effects
 

I had my second infusion 3 days ago. It is amazing how different this one was from the first. Very few side effects so far--mild headache, joint pain and severe dry mouth. But I have been on high doses of prednisone since 10/10 for pneumonitis. I believe the steroids made the difference. Will see next time when I am not on the steroids. They were concerned that I continue to loose weight--5 lbs in past three weeks. Because the cancer has attacked my cranial and vagus nerve, I have a difficult time swallowing. Eating is a chore and I am really sick of Ensure. But I am hopeful T-DM1 will kill the cancer lesions on the nerves nd in time they will regenerate. My right vocal cord was paralyzed at my first recurrence 3 1/2 yrs ago. This time it hit my left vocal cord (controlled by vagus nerve) so my breathing and speaking are severely affected. I had to have an emergency trach during radiation treatment. Can't wait to get this out. But T-DM1 has to work first and the nerves have to regenerate---a lot to hope for.

Re: TDM-1 side effects
 

Hi Nancy - it's sounds like you are having a rough time. Glad this dose was easier - hopefully you will get good results so those nerves can regenerate.
Is the pneumonitis treatment related?
I rang my trial coordinator about my cough yesterday and he said there is another lady like me with lung mets and her cough became worse and first two scans showed stable then the third showed dramatic reduction - guess we all respond differently.
Seems we are pretty close in our schedule with this - are you on Theresa trial or compassionate access? I am due for scans on 29th October.

Re: TDM-1 side effects
 

Amanda,

I have pneumonitis from radiation. I was denied on Theresa trial because of the radiation I received for severe pain. But I got into expanded access. Yes, we are similar. I was put on Tykerb and herceptin on my first recurrence. I was on this protocol for 3 1/2 years but I think it only worked for a little over two years.

It really breaks my heart to see young moms saddled with this fight. You are way too young to have to deal with all this. I really pray T-DM1 works for you so you can focus on your daughters.

Re: TDM-1 side effects
 

I would like to ask about your blood work results while on T-DM1. For those who have been on this for awhile, do the platelets get hit hard every time or just when you first start taking this drug?

Re: TDM-1 side effects
 

Hi, Nancy,
I've been on one year.
Platelets: YES. Hit every time. But rebound for next treatment. Expect bruising, too. I am on a weekly dose and close to the end of my trial. No tweaking until then. The study I'm on is to examine whether it's better to dose weekly or otherwise.

Best of luck to you,
Karen

Re: TDM-1 side effects
 

I haven't had any issues so far - bloods for two doses all completely normal.
I had my first scan yesterday - 7 weeks, 2 treatments - Stable lungs and smaller mediastinal nodes. Trial onc feels lungs are slightly better though not measurably so - nodules slightly less prominent though I wonder if he is just being optimistic. Report says some marginally larger, some marginally smaller, target lesions unchanged - overall tumor burden the same.
I am happy for stable but hoped for more.

Re: TDM-1 side effects
 

I will be receiving my third dose of TDM1 tomorrow. I receive it every three weeks. So far the first two infusions did bring my platelets down. Had to have a blood transfusion after the second dose. I have experienced severe headaches after each infusion which I now take a low dose steroid and they are usually gone by the third day post infusion. I have had to have a periencentisis done two weeks ago as I was retaining too much fluid which has messed up my digestive system since that time. My abdomen and liver have been swollen, however this is the first week that the swelling has reduced. I'm thinking it may be working. Other than that I have good days and not so good days.

Angie

Re: TDM-1 side effects
 

Thank you Angie!

I've had horrible swelling as well. Dr hadn't
heard of that before either. Scary really.

I'm on my 3rd dose as well, and much less
swelling. But, my labs suck. I'm scared for
sure!

Kim

Re: TDM-1 side effects
 

I'm praying for all of you ladies. Gods blessings to all of you.

Your friend,

Nancy

Re: TDM-1 side effects
 

Stable is good, Lorraine didnt get scanned until after 3 doses, had 3 out of 7 liver tumors gone. But her cancer was always around liver, and had been very aggressively treated all 6 yrs. some chemo every month. As the saying goes " Individual responses will vary " . that was jan 2011. got 7 doses at 3.6 , but plats did drop and each rebound was lower than before. so she reduced to 3.0 by later that Spring. got sepsis in April, almost dropped from eap. went 9 wks w/o tx .back on 3.0 by June. regularly every 3 weeks since. 1 tumor left Sept 2011. nov 2011 all gone , and invisible cancer squeezing right kidney ureter, bile duct gone too ! stents out ( which caused sepsis, if u have fever 100.5 dont wait like we did go to er, could have avoided sepsis ). If your plats drop and dont rebound , L.s went fro 223,000 to about 90,000 by 5 doses at 3.6, start support like we do w/ sharks liver oil, top quality fatty bone in steak ( not filet ), roast beef, lots ofgreens like kale, spinach , sweet potato, , lots of fruits, strawbwerries, blub, fresh pineapple, nuts . Its a kind of cavewoman diet . Some call it " neo-paleo " diet. God Bless, Good luck, soon will be approved ( before Christmas ? ) and give flexibilty

Re: TDM-1 side effects
 

Kim
When I met with my doctor on Thursday for my infusion they said that the swelling in my liver and abdomen is a response to the treatment. I also experienced swelling when I was on herceptin and Abraxaine. The swelling has gone down significantly on this third round. Feel like I have lost 10 pounds between loosing all the fluid and reduction in swelling. My liver enzymes are we're also high prior to his infusion, but always seem to go down by the next week when they take my labs again.
My side effects this time were dry mouth and fatigue on Friday. They have to give me pretty strong premeds before the infusion because i am allergic to herceptin. I have been sleeping since Thursday. Today I woke up with a backache and a mild headache. I am trying to resist taking the steroids as they really do a number on me. The doctor said if headaches get worse to take some. All in all the side effects have been better so far on this third infusion. The doctor also stressed to eat more protein as it ill improve swelling and energy level.

Angie

Re: TDM-1 side effects
 

This third infusion has been a bit rougher with fatigue and nausea but I'm ok apart from headache and joint pain today.

Phil - do you know of any successful stories with lung mets? The trial team have told me that they are seeing slower response in lung mets than liver mets and that the lung mets seem to respond slower. Fortunately all patients so far are still on trial and only one of the 6 prior to me was stable, the other 4 had all had at least a partial response and the longest participant is now NED after 12 months of slow regression.

My platelets have been higher on tdm1 than they were on tykerb and xeloda - so far no hits with my bloods - hoping it stays that way and also keeps working. My markers have never been reliable for me so they are not an indicator unfortunately.

Re: TDM-1 side effects
 

My tumor markers have stayed the same for eight years and I really would love to understand medically why they believe they work for some and not for others. They still run them every three months even though they don't work for me. I can only conclude it is because they can bill the insurance for it.

It would be very interesting to see which types of mets are responding best to T-DM1. Even better to know why. I have never seen this kind of info for any of the chemos. The only person I know on this site who is similar to me is our dear Sheila and T-DM1 didn't work for her. The only logical explanation for me, if you believe what they say about how the drug works, is that the tumor characteristics have changed regarding her2 or multiple types of BC disease is going on. It is a puzzle I wish they could solve.

Re: TDM-1 side effects
 

I have heard of lung mets being knocked out by t dm-1. I didn't mean to sound flippant when i said " Ind results may vary " above, of course we allwant NED. But each response is different, Lorraines took awhile , a yr to get to NED. I think they will find subgroups w/in her2 that respond more strongly to certain chemos, t dm-1 for one. and pert. Look at darlene gants amazing response to pert alone . Another factor may be prior aggr. tx to keep cancer as contained as possible, never giving it abreak , so t dm-1 has smaller target. just want appr for t dm-1 , and full appr for pert , so they can be combined , flex tx schedule , dose , etc. A few pts have stopped t dm-1 and still seem to have a+ after -effect, w/ other combos like herc/tykerb or herc /nav maintaining gains t dm-1 started. maybe pert will also help.
By the way, " blub " in diet recommendations above means fresh blueberries.

Re: TDM-1 side effects
 

I believe heavy pretreatment prior to T-DM1 may explain some of these different responses.

Re: TDM-1 side effects
 

Nancy - on reading the Emilia results (I think or it may have been one of the phase two trials) the treatment group were heavily pretreated with a median of 7 prior therapies and still got a significant response. I think that was one reasons for much of the excitement. I guess all of our cancers are subtly different too. I'm keeping on - stable is a good result and I felt good yesterday at only day 4.
I hope you are doing ok Nancy and Angie. xx

Re: TDM-1 side effects
 

Angie!

Thank-you SO much for your message. I'm so glad the swelling is going down for you! I'm better swelling wise on 3rd infusion - and fatigue is bad for me as well! I did not get swelling on Abraxene - but it was a good chemo for me. I did not fail it - just went off after no change.

Anyways, thanks again - fingers crossed this is working for us.

Hugs,

Kim

Re: TDM-1 side effects
 

I will be doing my 25th cycle of TDM-1 next week. My side effects are elevated liver enzymes, low platelets and for some reason, it seems to be causing issues with my lungs. I have inflammation in my lungs. We lowered the dose to 3.0 (only one dose reduction is allowed) and my lungs seem to be holding steady. Originally, I had mets to lungs, brain and bones. The lungs cleared really quickly with taxotere and herceptin, and the bones have been slower to respond. Some times it is hard to tell what is going on with the bones. I have a stable lytic lesion in T2 vertebae, and my first left rib. Otherwise, I am doing really well. Sometimes I have nausea, fatigue and extra long periods, but those are about the main issues. I stay away from all dairy, and I think this helps, but who knows?

Re: TDM-1 side effects
 

so good to hear from you ! so glad you are still getting t dm-1 ! Lorraine is 2 years on t dm-1 this week , doing great ! 28 doses , 21 at 3.0. Lorraines exp access allows one more reduction to 2.4. we are trying to avoid that, as we dont know if theres any cancer lurking. even tho ned for a yr now. plats are L.s issue, about every 4th dose she has to wait 4 weeks for plats to make 75,000, which is new limit in her roll-over study. we would like to get an exception for tx every 4 weeks at 3.0 , but havent asked yet. the plat support we have talked about before seems to definitely help - sharks liver oil, kale , red meat etc. why do you avoid dairy ?? Again , so glad your doing well- appr. is coming soon , when it does we hope to tell our story to the Press , the story of how This FDA botched appr of this amazing drug , we think of our friends who never got achance at t dm -1, like Jay, No Respect for Stage IV Survivors Rights !

Re: TDM-1 side effects
 

I have had my 11th round of TDM1. The dose was reduced 20% round 10.
I would like to know if others are coping with very very dry eyes. Loss of saliva. Sore throat. Dry nose. (although it is often runny!) Sort of bad acne on the face during a week in the middle of each round. If yes how bad is it and what do you do?
Michka

Re: TDM-1 side effects
 

Michka,
Yes, yes and yes to the side effects.

Eyes - I mentioned my failing eye site to my Dr. who informed me that the dry eyes were the cause. I went to my opthamolgist who confirmed I have very dry eyes. He gave me eye drops to use twice a day and also a fish oil supplement. (still need to review with my onc) If it persists there is a drug the opthamologist can prescribe but of course I don't want to take that step. The dry eyes are strange as I just can't focus. I have to blink two or three times to read something...even with my glasses on.

Dry mouth - UGH...doesn't this drive you nuts???? I kept thinking I was just thirsty and kept trying to drink more and more. So, I went and bought an over the counter dry mouth rinse called biotene. It is kind of weird, but it has helped to keep in bearable.

Definately sore throat. It just feels so raw. I haven't figured out what to do here. Any suggestions??

Finally the acne...you just explained something. I am day 6 after my treatment and I have what looks like a pimple on the end of my nose!! Lovely. My thoughts immediately jumped to skin cancer....so you post has eliminated my concern. I must go back to my teenage years and come up with creative ways to hide it. Sigh!!!

So we are very much tracking on the side effects. I just hope this is working. More on that later.

I hope some of my suggestions help....I find knowing we are not alone, very comforting.

Re: TDM-1 side effects
 

Lori,
For my eyes that also burn they gave me a gel. I have to get up 2 or 3 times during the night to put some in my eyes because they hurt too much.
For the mouth they suggested bicarbonate. It is not a solution for me. It may prevent mouth soars but does not help for he lack of saliva. They also gave me a spray that is better than nothing. I'll look if I can find biotene or something sold here "over the counter".
For the throat, nothing to suggest so I suck unsweetened pills for sore throats when it hurts too much.
For the acne they gave me an antibiotic treatment (pills) although I did not ask for it. They said that if it got worse I would have it handy. I hope it doesn't mean that they know that it is going to be worse....I don't mind being 15 years old again but not that way! It seems to me that nobody except us 2 reported this.

These side effects got worse the last weeks while others are getting much better. How strange. I hope you are doing OK Lori. Any scan coming up?
Michka

Re: TDM-1 side effects
 

I spoke to my doctors and yes, there is one more allowable dose reduction, although, I am not sure it I will get it on trial. I avoid dairy because I have read so many books about how dairy is unhealthy. I also grew up with a family doctor, who said that humans should only drink human milk, not cows milk. It is also unnatural to keep a cow producing milk its entire life. So much, also casein is one of the most carcinogenic natural foods we consume. Read the China Study. Anyway, I am happier to avoid this food type. It also creates inflammation. There are those who believe in drinking raw milk, as it still contains healthy nutrients. But that is not appealing and also comes with its risks.

I am also having issues with my eyes, and it is hard to see things, and focus on things, I never related it to my eyes being dry. Maybe we should drink more than normal. I will keep you updated on any success I have.

I do not have any acne issues, but I do seem to get a sore throat and feel like I have a cold, almost every cycle.

I am interested in what everyones daily diet consists of....
Best wishes
Fern

Re: TDM-1 side effects
 

I don't seem to have the issues mentioned so far. I have had 4 doses and so far it is an initial reaction that lasts a few days - extreme lethargy first day and moderate nausea, headache, second day fluey, mild nausea and headache, fatigue improving, third day improving again but wake with headache and some joint pain - usually relieved by day 4.
Apparently according to the trial onc the TDM1 doesn't hit my good at all - my bloods look like a normal person's! I have noticed a dry mouth for about a week post treatment and my nose feel dry despite running. I also have had some issues with asthma/hay fever type symptoms that we feel is not the cancer in my lungs but allergy - I seem to be much more sensitive.
I've noticed something funny with my tumor markers - never a great indicator for me as I see spread on scans prior to change in markers and usually even then it is within normal limits. I noticed this week that my TM (ca15-3) had doubled since I started the trips (I haven't been getting these regularly) from 22-47 and my CEA has in read from 2.8-7-6.8. They have been stable for the past 6 weeks and my scan 3 and half weeks ago showed stable disease in lungs and reduction in chest nodes. I wondered if it was some sort of flare? Guess next scan will tell.
As for diet I eat a whole food diet, focused on plant based foods and including fish several times a week. I don't eat dairy apart from the occasional indulgence in some goat cheese though I am considering adding a good organic biodynamic yoghurt back in (may make my own soy yoghurt - I feel comfortable with soy) I have a number of juices including at least one - two green juices including spirulina, a lemon juice in water and maybe a carrot and beet root and ginger if I feel like it. I also eat berries and fruit, limit sugar, no coffee or alcohol. I eat eggs a couple of times a week. I believe my diet helps to keep me well going through treatment and am sure it is helping keep my platelets and blood in good shape. I just need it to also help keep the cancer at bay as well. I enjoy my food and am relishing new tastes. I will not feel guilty about indulgences and enjoy them when I make the considered decision to indulge (though I realized on my trip to Italy that my body definitely does not like dairy and had to skip the gelato!) I am listening to my body a lot more. I also exercise regularly - swimming, cycling and walking, have accupuncture regularly, attend a support group and live life to the full.

We are all so different aren't we? I am glad to be coming out of the fog from this treatment. Yippee!

Re: TDM-1 side effects
 

Amanda, I just love your positive attitude! Gods blessings to all of you. Please know you are all in my prayers.

Re: TDM-1 side effects
 

Hi all, thanks for the posts and the positive attitudes. I have had bone mets for 3 1/2 years and have been thru a number of treatments. I found a trial in Fairfax VA and have just had my second treatment. It was interesting to hear about the dry eyes because I thought my problem was due to multiple eye surgeries for retinal detachment some years ago but now it makes sense to me. And the dry mouth - some mornings I can barely speak (my husband probably loves it!) but I have Biotene in my bathroom that I haven't been using. My dentist gave it to me ages ago. It's great to see your posts because I always just get on with whatever symptoms I have and don't really consider trying to "fix" them 'cause I'm used to discomfort from the various treatments I've had. It is so good to "talk" with all of you. Now I am off to put drops in my eyes and Biotene in my mouth! BTW - there is also a Biotene toothpaste - I have that too! Take care my fellow fighters and enjoy this beautiful season. Katy