Can't do Gemzar...sigh...the only one that ever works

[Mandamoo]

I'm sorry to hear this. Why can't you continue on Herceptin and Perjeta alone - they shouldn't affect your counts and may give them more of a chance to recover and also possibly keep you stable or better.
I had a cuppa with a fellow TDM1 trial friend the other day - we both got bumped off at the same time - me for progression and she for issues causing liver inflammation and now serious liver problems (this has been attributed to TDM1). She is receiving Perjeta and Herceptin alone and so far is stable so maybe it could be something for you?

I don't know why you are feeling so bad and i am so sad to hear that you are. You and I have had mets about the same time (I have lung mets - about 50+ spots some of which are now over 3cm and now also numerous mediastinal and other neck nodes) and I feel almost normal apart from my irregular, annoying cough. I can't imagine dying yet at all despite my continued progression.

I've done probably as many treatments as you and have already done TDM1 and the Bolero (affinity) trial. Tykerb and xeloda was good for me but not for long. One of my oncs here is enthusiastic about afatinib and neratinib. I am currently on abraxane (just started).

You've stated you don't believe in alternative therapies but I have employed many complementary therapies and believe this helps keep me actively living.

Are you on or have you considered anti-depressents too? Maybe that will help with the low feeling which totally sucks. I do know what it feels like to feel like you are up against a wall - a friend once said to me "but there is always a ladder" I hope that you find yours.
xxx

[cheery]

Hi Coolbreeze

Sorry to hear you're feeling terrible. I'm also on Gemzar now but with Herceptin and Tykerb for my liver met recurrence. I've been feeling more tired lately (yes, there are days too when I can hardly get out of bed).. but I'm not sure if that's due to the liver or low WBC. My WBC was hovering around 1 but my onco has been kind enough to continue to give me chemo.

So.. what did I do to raise my WBC? My TCM doc is pretty good, his years of experience in TCM is longer than I have lived in this world, lol! I've since told him that I desperately need my WBC to be up and he's thus far been able to keep it up at around 2. I'm pretty thankful for that. I do make sure I have lean beef several times a week too, for the iron and protein.

I've had neupogen shots and it's pretty effective for me too. But the pain I get from neupogen is harrowing to say the least, I do not wish to have go through such unnecessary pain at this stage of my life.

My TCM doc tells me honestly that TCM can only help alleviate the side effects of chemo and enhance the effect of chemo. TCM will not be able to cure me. I do think it's helped me in the last 5 years with all these non-stop treatments.

For WBC, there's research that wheatgrass and Turkeytail mushrooms can help raise the WBC. Personally, I didn't find wheatgrass nor Turkeytail mushroom effective for me.

ETA - you've not mentioned liver enzyme levels. I've had liver injury before (liver enzymes shot through the roof) and it made me very tired too. I took liver essentiale then. Milk thistle and beetroot are supposed to help the liver detox. I do have milk thistle in a daily nail supplement and try to get fresh beetroot but I can't say if they're effective.

Hope this helps and that you'll feel better soon.

[Kim in CA]

Dear Coolbreeze,

Wow, I had never heard of anyone having such a bad reaction to Neulasta etc. I hope your doctor has some answers for you tomorrow.

Like you, I've had alot of chemo, and it's all cumulative on your bone marrow. I did not bounce back after the taxotere this last time, like I did the first time I took it. I was able to go 8 cycles last time, and this time I was crying "uncle" after round 4! I'm still feeling the effects nearly 3 months after stopping it. In fact I've been told this may be my new normal. I would not have even been able to do the 4 rounds if I couldn't havetaken the Neulasta and Procrit.

Are you still having progression while staying on just the Herceptin and Perjeta? I was so hoping that combo would give you some time to bounce back and not let things get growing again.

Hoping your doc is an "out of the box" thinker and comes up with a plan for you.

Hang in there,
Kim