7 years & counting...NED still elusive. Chest nodes back.

[jml]

Hi All~
I was really hoping to celebrate my 7yr Cancerversary (on May 17) w/NED, but as it turns out, he's yet again, elusive
I'm only 5 weeks off of my last cycle of chemo-Gemzar/Herceptin - chest nodes again- medastinal/hilar/subcarinal. With that last cycle, I've now had 105 rounds of chemo. Ugh! And it didn't even work.
I'm really bummed right now, and just need some time to let the news settle. Then back to the drawing board research chemo combos, maybe radiation again (previously I'd had 7 weeks of rads for supraclav nodes).
The good news is my liver is still clean - 3+years now, and my kidneys are okay too.
I just really really really don't want to be bald again.

Any words of wisdom are greatly appreciated.

Keeping the Faith - though it's a little hard today...

Jessica

[Believe51]

Sweet Jessica, I am sending you hugs right now as you try to digest this all. I know this journey has such ups and downs and those downs are really low. I sit here tonight really relating to what you are saying. I am also begging you to keep the faith and breathe through this all. It stinks I know, Jessica but one day at a time will help you get by. When this all sinks in and is digested, I am certain you will do that research, gather that ammo, and fight with all of your might. I am sorry you feel sad and maybe a bit defeated but so happy that you know where to come when you feel this way. We are here for you and if I could shoulder some of your pain, I would. Please keep us updated. Walking besides you.>>Believe51

[WomanofSteel]

I know that it is hard sometimes when we have to face this disease everyday, but you have come a long way and just need to find a little something to go that extra mile. Hang in there, we are all beside you. You can do it!

[Rich66]

Hopefully they found NED at aacr. If not, at least some powerful chemo combos to help you.

I know Lani posted this node mentioning article:

Links Bicarbonate increases tumor pH and inhibits spontaneous metastases.

Robey IF, Baggett BK, Kirkpatrick ND, Roe DJ, Dosescu J, Sloane BF, Hashim AI, Morse DL, Raghunand N, Gatenby RA, Gillies RJ.
Arizona Cancer Center, University of Arizona, Tucson, Arizona, USA.
The external pH of solid tumors is acidic as a consequence of increased metabolism of glucose and poor perfusion. Acid pH has been shown to stimulate tumor cell invasion and metastasis in vitro and in cells before tail vein injection in vivo. The present study investigates whether inhibition of this tumor acidity will reduce the incidence of in vivo metastases. Here, we show that oral NaHCO(3) selectively increased the pH of tumors and reduced the formation of spontaneous metastases in mouse models of metastatic breast cancer. This treatment regimen was shown to significantly increase the extracellular pH, but not the intracellular pH, of tumors by (31)P magnetic resonance spectroscopy and the export of acid from growing tumors by fluorescence microscopy of tumors grown in window chambers. NaHCO(3) therapy also reduced the rate of lymph node involvement, yet did not affect the levels of circulating tumor cells, suggesting that reduced organ metastases were not due to increased intravasation. In contrast, NaHCO(3) therapy significantly reduced the formation of hepatic metastases following intrasplenic injection, suggesting that it did inhibit extravasation and colonization. In tail vein injections of alternative cancer models, bicarbonate had mixed results, inhibiting the formation of metastases from PC3M prostate cancer cells, but not those of B16 melanoma. Although the mechanism of this therapy is not known with certainty, low pH was shown to increase the release of active cathepsin B, an important matrix remodeling protease.

[Mary Anne in TX]

I surely did wish that I had a suggestion, but I'll bet you'll get tons of them soon. I hate that you have to keep working to find the right combination of chemo. Best wishes and my sincere prayers. ma

['lizbeth]

Jessica,

I agree - losing your hair really sucks. I hope the next combination is the magic combination for you, no more mets!

Keep us posted. 'lizbeth

[Rich66]

In case you are ER+

1: Gan To Kagaku Ryoho. 2009 Apr;36(4):671-3.
[A case of metastatic breast cancer resistant to anastrozole treatment responding to high-dose toremifene.]

[Article in Japanese]


Murata T, Yoshino H, Bandou H, Morita K, Kurokawa M, Inaki N, Kotake M, Kadoya S, Yamamoto M, Takayanagi T, Yamada T.
Dept. of General and Gastroenterological Surgery, Ishikawa Prefectural Central Hospital.
The patient was a 56-year-old female. At the age of 35 years, she had under gone left mastectomy and axillary lymph node dissection for breast cancer. After surgery, hormonal therapy was continued for 3 years. Then, no treatment was performed. In this study, single therapy with an AI agent was started to treatbilateral supraclavicular fossa/mediastinal lymphnode metastases. After 6 months, a partial response(PR)was achieved. However, progression of the disease(PD)was noted after 1 year. Thereafter,the regimen was switched to single high-dose(120mg/day)TOR therapy. CT revealed the disappearance of the bilateral supraclavicular fossa lymphnodes and a marked reduction of the other lymphnodes. Currently, the patient is being treated, with an interval of 10 months from the start of TOR therapy.

[Joan M]

Jessica,

I'm keeping the faith with you.

I'm sending you good vibes for finding the next right treatment.

Joan

[Shobha]

Keeping you in my prayers, Jessica. May God lead you to the right combo and bring you to NED status soon.

hugs,
shobha

[jml]

Thank you everyone, for offering me a soft place to fall. You all are absolutely the 1st place I turn for comfort and for celebration, and I can't thank you enough.
Surviving 7 years as a Stage IV'er is pretty amazing, I know, and I don't take that for granted. I'm just feeling a little defeated again -so much chemo, so much surgery, so many sacrifices to accomodate this disease. Not just for me, but for all of us, and for those who love and fight for us. I'm mad at it. And sad. And ofcourse, scared again.
I know I can do treatment again. I know I can. But honestly, I'm just really sick & tired of it.
I think what makes me the most sad is with each recurrence-I've had too many to count...or has it been just one long disease process?- I find myself mourning, again, for all the things in my life that thought I would have-my own family, stability, freedom from this burden - but have to suspend, if even for a short time, yet again.
With each recurrence, or failed treatment, I fear "How much longer can my body continue to be resilient?" and I wonder if this is the beginning of that end? I wonder why I'm fighting so hard, if in the end, I will pass alone. My parents, sisters, friends all have their own families to continue on with, and they'll all be okay if I go. And then I can then watch after them as they always have for me. I think about my little nieces -7&3. The older one was only 3 months old when I was dx'd, and she has only ever known me with this disease, the multiple baldness, the scars, etc. I'm so glad to see those little girls grow up, but at the same time I'm aware that they're now old enough to be sad and miss me if I go.
The reality is, I've been blessed with a really great quality of life, in spite of all the treatment & surgeries. I've accomplished a lot, been blessed with a lot, and feel happy every day. I consider myself charmed to have all that I do have. My strength and endurance always return & I'm able to be very active. My clients are often amazed (& hopefully inspired), that I can still kick their butts in a Pilates class even though I just had Chemo#100+ the day before! I know how fortunate I am to have the physical strength & resilience that I do have.
Once I get over this "sad-hump", I'll call on that to drive me back into fighting mode. I just feel a little empty today.
So thanks for listening, and even more for understanding.
You all are another one of the many blessings I have found on this ironic journey.

I AM Keeping the Faith~

Jessica

[Sheila]

Jessica
I am also dealing with multiple node mets now....after 60 Taxol treatments, and 1 1/2 years of Xeloda...a little Avastin sprinkled in, and as always the Herceptin. I am thankful that this beast choses to remain in the nodes, but why cant it just give us a break! I will know today what my next chemo cocktail will be....
We just need to keep chasing NED...sooner or later he'll get tired and we'll get a break....sending you positive thoughts on this next regime.....I am with you!

[Pam P]

First, 7 years and still counting, congrats! May 17 is a good day to celebrate - it's Syntendde Mai - Norwegian Independance day. If you're Norwegian like me you'll know the tradition, if not you'll still celebrate your surviving knowing lots of smiling Norwegians are celebrating with you.

Second, RATS on the node activity. What a disappointment to be so close to NED. Why did you stop the gemzar? If it was working would it be wise to just go back on that?

I know you'll get a good treatment plan to blast those cancer cells and hopefully NED really soon. I'll have 8 yrs in June - never with NED (except initially before bone mets were found), but I keep hoping.

I'm with you on the hair loss - it is such a bummer. This is the 3rd time I've been bald. I do have a wig (pictured) that looks pretty natural on me so that has helped. I'm getting a new one this week - whoopie, I guess, but would rather have my own. The good part is being bald in the summer is cooler - not much consolation I know. Hey bald & NED = priceless.

Wish you good health and a gentle but effective treatment.

[Believe51]

Jessica, how are you making out with your planning? Just wondering how you are doing and hope you are feeling better about things. Your posts move me so and I cannot get them out of my head, you describe your feelings so well. Thank you for sharing your journey and your support, you are loved.>>Believe51