HER2 Support Group Forums - View Single Post - TDM-1 side effects

Mandamoo · 11-24-2012, 11:56 PM

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!

11-24-2012, 11:56 PM	#78
Mandamoo Senior Member Join Date: Jul 2011 Location: Melbourne, Australia Posts: 432	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! __________________ Amanda xx 40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11 Wife to my wonderfully supportive husband of 17 years! 22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old (L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins. Fec3, Taxotere and herceptin2 - stopped due to secondary diagnosis June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy! September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing. January 2013 - herceptin, carboplatin and Perjeta (compassionate access) April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.