An Update

[GrannyNanny]

Hi friends -- I can't call you "seedy friends" any more, since we've not exchanged seeds or seed growing news for quite a few years. Nevertheless, you ARE my friends, and I want to catch you up on what's happening on the health front. For those who are new to this site in the last year or so, I should explain that from November 2012 to April 2013 I was on some pretty nasty chemotherapy, but came through it (this was the third time) with the cancer once again in remission. In November 2013 the tumor marker (assesses a protein in the blood that begins to increase when cancer is revving up again) started to rise -- only about 30 points, but three weeks later it was up another 25, indicating that something was going on. An MRI scan showed NO cancer spots, which was very good news, but the fact of the rising tumor marker numbers showed that there was cancer activity, but in such tiny spots that it didn't show up yet on a scan. So, we are being "proactive", and I'm "off to the races" again, but this time with a major difference. The drug I'm on -- an infusion every three weeks -- is one of the new "targeted" cancer drugs, which goes on a search-and-destroy mission, targeting only cancer cells and not all the other fast-growing cells in the body. Those are things like hair, nails, skin, inside of mouth and nose, taste buds, etc. The miraculous news is that it is working AS advertised, giving me none of the horrendous side effects that I'd had all three other times and particularly the last -- my hair is not falling out, my fingernails and toenails are not falling off, I don't have a rash anywhere, my mouth is not sore nor are my taste buds affected, I don't have nosebleeds, etc. I am astonished at this med -- I've had two infusions so far-- one a month ago and one a week ago -- and I feel GREAT! I keep "waiting for the other shoe to drop" and suddenly find that I'm miserable again, but so far it's been a miracle. My oncologist says that he has several other patients that have been on this drug for a few months, and they are doing just as well as I am.
SO -- the news is mainly good to excellent, and if we can get that tumor marker down into the single digits, I'll be in remission again. My cancer is turning out to be a chronic disease -- like having diabetes, or a heart condition, or rheumatoid arthritis, or any one of the many other chronic diseases "that flesh is heir to" (see Hamlet), and I'll probably have it coming back periodically for however long I have yet to live. With these new drugs coming out, however, there is a good chance that I may live to plague you and my other friends and relations for a long, long time.
If you have friends or family members who discover they have cancer, please encourage them for me, and tell them that it is often possible to beat this stuff! Love to you all, Phyllis
PS -- forgot to mention the name of the drug. It's Kadcyla (Pronounced Cad CIL la) which sounds like Godzilla, and conjures up mental images of a big, bruising cancer killing monster, stomping around my system like Pac-Man, gobbling up the nasty cancer cells. Go, you Monster!

[Rocco]

Dear Phyllis.
You are a remarkable lady,I wish you the best.
Rocco.

[kHT]

Dearest GN!
My first thoughts were oh no not again! You have inspired us with your journey and courage to fight this
battle by educating the masses. Thank you for the information as I passed it along to my family members
whom are also fighting the battle, bless you for sharing. Keep up the fight and one day there will be a cure
with folks like you that educate!! You are the best!!

[rosemarie]

Phyllis, you just made my day!I am so happy to hear this news! With all the good thoughts and love coming your way, things will just keep on getting better!

[LucyGoose]

Yippppeeeee, Phyllis!! So glad for you not to be sick...I will mention this name of meds to my uncle.....XOXOX

[char]

So glad to hear the good news. Char

[GrannyNanny]

Thanks, everyone, for your continuing support -- it's been seven years now, would you believe???? Since they give stage 4 metastatic breast cancer patients 2-5 years to live after diagnosis, I'm doing pretty well to have made it to seven! This Kadcyla is only used (I think) for estrogen-positive and HR2 positive breast cancer for which the taxanes (Taxol, Taxotere) and Herceptin and other drugs like the platins (cisplatin, carboplatin) have already been tried. I don't know that it is effective on any other kind of cancer, but I do know that there are other "targeted' cancer drugs out there that are used against other types of cancer. I'm sorry to inundate you with so many technical names for cancer drugs, but for those of you who have loved ones dealing with this stuff, those names will probably make some sense. Phyllis

[pauhaus]

Great news Phyllis! Keep up the good work and thanks for sharing the info regarding Kadcyla.

[Linda P]

The advent of the targeted drugs is a giant step forward in treating cancer. I'm glad to hear that there is one that is available for you, Phyllis.
It's good to know that you can knock the cancer activity back without the terrible toll to your body the other drugs exacted.
To quote my grandkids: "WOOT!"

[rufie98]

Hi Phyllis. I am so glad that the new drug is helping you. It is amazing that that drug does not have the nasty side effects of the others commonly used for cancer treatment.

My sister is in remission too. She had a most difficult year---three operations, one round of chemotherapy and a round of radiation and a lot of drugs. Never seemed like it was going to end. I have seen the physical and emotional changes this disease brings with it.

You have been through a great deal no doubt. I wish you all the best in this new journey and in the future.

[thy]

Ohh, Phyllis
I am so happy to read there is a way better drug for you

[GrannyNanny]

Rufie -- Please give your sister my congratulations for having endured and survived all that! My heart goes out to her, in the middle of all her struggles. Good thing she has you and other family members to help her keep going. I hope she is in remission now, and headed for better times. Love to her and all of you, Phyllis

[rufie98]

Thank you Phyllis. I gave a little gift to my sister this Christmas with a saying from Elizabeth Kubler Ross. I believe it applies to you too.

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."

[jgh]

I can't tell you how much I've appreciated your "travel writing" describing your cancer journey. Like your friendship, it has meant a lot to me.

[GrannyNanny]

Rufie -- thanks so much for that lovely quote. Combating cancer certainly does change you, and you hope it is for the better, all the while fearing that you will turn into a cranky, negative crab!
Jim -- thanks to you, too. Both you and Rufie nearly made me cry with your lovely words. It's an even trade, I think -- your travel writing in exchange for mine: the outer world, full of wonder and adventure, and the inner world, filled with the same. Love, Phyllis

[rufie98]

Words are a powerful thing Phyllis. The sharing of your journey has educated and increased awareness. I think you have done a lot of good.

[Diana]

Phyllis-

Woo Hooo! Looks like this will be a Happy New Year for you after all. I've read about targeted cancer drugs in CURE magazine, but thought it was off in the future sometime, just being introduced in clinical trials. No chemo side effects, is FABULOUS, but in a way a little scary too...you begin to wonder if it is really working. How often do they check you for tumor markers, and how many infusions do they expect you will need in order to see your numbers go down? Time to buy a comb.

-Diana

[GrannyNanny]

Diana -- Yes, I've had a brush, and hair to use it on, for some time now, and since this new drug seems not to be affecting hair, I continue to have some. To answer your question about the infusions -- I have one every three weeks, and it takes most of the morning to get it done. I've had two, with the third coming up on Thursday of this week, at which time they'll do another assessment of the tumor marker. They didn't want to do it before that second infusion, because that would have assessed the effects of only the first treatment. This assessment will show what two treatments have done to the cancer, and as we go on with further treatments we'll see how many I will need to have to give this cancer a real kick in the slats. I want to see the tumor marker down to ground zero for once, and then maybe I'll be "clean" for a couple of years before having to get back at it again. This is for me, remember, a chronic disease, so it will have to be managed from now on, rather than "cured". Thanks for your interest -- I'll post again after the tumor marker score comes in on Thursday. Phyllis

[party_music50]

Phyllis, that is great news! and thanks for posting the name of the drug!