Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hi Karen. I was watching for your post and I am so sorry that it did not work although I can imagine how relieved you are to get rid of the bad SEs. Are your oncs using the genomic sequencing to choose a new strategy? Do you feel it is helping? I hope you will soon have a new plan and I am happy the doctors have several options to think about. Stay strong. Hugs. Michka

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen, I'm so glad you've gotten an answer. Now you can give yourself a chance to rest and regroup a little before starting again. You're right, all the uncertainty in and of itself is exhausting. Your oncologist sounds wonderful!

I think of you every day, sending you positive thoughts and energy!

Carol Ann

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Ok, Karen. Take your clarity and get the hell out of that trial. Not a match made in heaven. Not for you. We are all different.

Yes, researching, conferencing, worrying, wondering, waiting is ABSOLUTELY THE WORST PART of all things canser. It drains and depletes us.

You did your job. Well! Gave it your all and got major bathroom drama only. At least Taxotere gave me shrinkage w/the hrs hanging out by and on the toilet.

Something just right is next. Your doc will find the key. And alllll the ladies here have offered some really interesting, thoughtful, creative options you should consider for sure.

HAPPY EASTER TO ALL.

Sending love and positive, healing energy.

Am I the only one that is tested for CA 27.29...??? Have to ask. I also get CEA and something else I can't recall at the moment.

ANDI

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Yay, please keep us updated as to your next move. I had discussed palbocyclib with my doctor and that is another weapon in our arsenal. Please let me know what you thought of the AVX901 vaccine trial. We look forward to your update. I too have active cancer but it is minimal right now, so I am just going to stay on Herceptin, until my scans show further progression. Not worried, just watching and waiting....

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen you are truly a Warrior Woman - you have such an amazing attitude.
You go girl, on to the next combo, trial, etc.!

all the best
caya

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

As my friend said We Fight , And We live . Wishing you the very best in your new txs.

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hi Dreamer,

I love not worried, just watching and waiting... That is a feat! And exactly what you need to do! A challenge but doable, with determination. Until you have confirmation of something to really worry about, don't worry -- that's what I always tell myself...

There's a drug call palbocyclib??? Why does that make me want to laugh? Who made that up?

Karen, refresh, restore, reboot, relax and fortify yourself for the next step. May the big D not darken your door. (I live with this and it is so incapacitating and depleting .) Each day I reassess and alter my supplements and liquid Imodium accordingly. And life is sweet again... (Do get some amazing amount of good reading accomplished in the process!) :o))

GINGER ROOT 1,000 X 2 twice a day -- after a month -- is having a positive impact.

Plus this probiotic and a different probiotic at 4PM, 2 Wobenzym 1/2 hr before meals (anti-inflammatory and immune system booster) and if all else fails -- anything with codeine in it!! For those who are stuck in the bathroom...

Love,
ANDI

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Andi,
I boil ginger three times per week or as needed. I love the bite of the root. I take a two-three inch piece, smash it flat, and then fill a small pot with water and boil out.
Works like a charm.
Love
Karen

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

That's great, Karen. But that involves a degree of cooking, which I seem not willing to engage in.

I do make a bowl of cereal with cut up banana. Scramble an egg and make toast. Even concoct a sandwich. Oh, and make tea. Laugh out loud.

It has taken a good month, but I definitely see an improvement in my IBS. With all the other supplements/liquid Imodium that I mentioned.

I JUST WANT YOU TO FEEL GOOD. NO STOMACH PAINS. NO BATHROOM DRAMA.

Well, I want that for all of us who have that issue...

Last night, for example, I had stomach pain, which when I lie down seems to occur. I have deduced that it my innards trying to move things along and actually have a BM. I took the bull by the horns and I took a fabulous gas pill I have to help. Half hour later the pain intensified. So I went for it -- I took a cup of liquid Imodium. The pain stopped.

And, first thing in the AM, I had a normal BM.

Sorry for sharing the gory details, but I think that's what we each need to do. We think we have nothing to add to the conversation, but the little things we notice and experience personally can help someone else in need. That's how I see it...

Sending love your way,
ANDI

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Andi, THANK YOU for sharing all the gory details ... we all have them, and yes I do think it is helpful in so many ways! You don't know who may be having similar symptoms and could benefit from the info. :)

Carol Ann

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

The chemo room (where I used to hang out a lot) was a great source of information. Other patients... Not the grumpy, angry ones, the others.

And the chemo nurses -- angels that they are!!! -- are a fountain of invaluable info which they've collected. Honestly, when it comes to remedies for what ails you, they more than the docs have some seriously helpful suggestions and input.

Everyone in the chemo room was either constipated (a dream of mine) or had major bathroom drama. We compared notes.

For constipation I was told Milk of Magnesia saved many. And magnesium 400 mg, then keep adding 100 mg till you go. NOT AN ISSUE FOR ME. I can't tolerate 100 mg of magnesium period.

Then there was the discussion about diaper rash. It really hurts! Never knew babies suffered so. KY...

Just saying...

Carol Ann, hope you have major results from your tx and almost NO side effects!

Keep us in the loop, please...

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Andi
The ginger tea is just a boiled piece of root. You are going to love it.
The problems have stopped now that I am off the pills. Caused a continual runny stomach. It's over.
Make that tea! If I were around the corner, I'd do it for you!
Thanks for extending your warm hand once again-
Love
Karen

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hi Karen,

Thinking of you. Please keep us updated on what you decide to do next. Andi, I spelled palbociclib wrong. (This is the correct way). Sending all you warriors healing wishes.

Best wishes
Waterdreamer (Fern)

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hi, all!
Fern, I am sorry not to have called back. It's been a whirlwind around here.
Thanks to everyone for writing and for well wishes. I hope to get back to you all soon. (Love).
Am now on Navelbine and Herceptin. We tried two doses before, but that was on the heels of the devastating surgery and my body was too weak to take it. I had my first infusion last week and feel pretty good thus far.
So glad that trial was over. I feel different already. That should mean that it's working. I felt the other was not, much to the disappointment of my oncologist. This just goes to show that even using the supposed match made in Heaven, via genomic testing, IT DOESN'T ALWAYS WORK.
Warmly,
Karen

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen, I'm so glad this is working now for you, YAAAAAY!!

Carol Ann

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

I am not sure it is yet, but I am hopeful!

Karen

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

CRAP! Karen, all I have to offer is prayers and a huge cyber hug. I know you and yor team will come up with a plan...