When your tumour markers rise...

[Lisa]

Let's see if I can focus my thoughts to write this. I just talked to my onc's office about my mri/PET results. o.k. good news first.

No brain mets. No lung mets. Liver still O.K. Excellent news, I guess.

Now for the rest of the story.

Even though I'm on weekly Taxol, tri-weekly Herceptin and Zometa...

involvement in lymph nodes around bladder.
involvement in lymph nodes in stomach.
involvement in lymph nodes other places I can't remember.
increased bone activity in right rib (it HAS been hurting some).
increased bone activity in pelvic region (ditto).
and on the spine, T10, I think, increased activity. They think it may be impinging on my cord. What they didn't know is that when I sleep on my back lately, i wake up with my left arm asleep.

So tomorrow I have my normal treatment, but Herceptin and Zometa only.
I'll probably switch to Abraxane soon. And back to weekly Herceptin, I hope. I'll stay on Zometa.

After treatment I'll have an MRI of my spine. If it looks like it's causing problems, I'll either have radiation or surgery. DAMN!!!!!
I can't help but think of Mary and my neighbor's sister-in-law, both of whom lost their battles because of spinal tumors.

Depending on the MRI, I might have to cancel my NJ granddaughter trip. She said if the MRI looks o.k., then go. But how can I go when I feel like I need to be here for new Abraxane treatment. I've told Mel all along, though, that I didn't think I'd be going. Unfortunately, he won't go without me and he SO wants to see that baby.

Any words of encouragement would be welcome now.

Love and light,

Lisa

[Pam P]

Lisa -- This is not the news I was hoping you'd get. DAMN is right! You have been in my thoughts again since I read your post a few days ago. I'm going to celebrate the no brain, lung, liver activity news. And I'm going to pray hard that the switch to abraxane will be the answer to wiping out all that other node activity & the bone stuff. I hope you get quick & good news on that MRI so you can be one the way to seeing your grandbaby. Even if you are switching to a new chemo, maybe you could still sneak in at least a shorter trip to N. Jersey to see family & start the chemo as soon as you get back? Having some fun right now would be good medicine too. I know you'll make the right choice for you.

(I just started xeloda today & my onc. wants me not to go any where for the 1st month or so to see how I do on it. I'm feeling down myself about not getting in a little summer trip now.)

I'll be waiting to hear about the MRI. Pam

[*_TriciaK_*]

Dear Lisa, I read your post with tears in my eyes! You have been like a rock to so many of us and I know there are many more prayers than mine going out for you! I too seem to have some spinal involvement, in T11 this time. I'll know what it is after a PET scan next Tuesday. However, BC mets showed up in T9 and T10 vertebra 15 years ago, and after about 8 years the last MRI report said "HEALED BC mets". So it is possible to lick the spinal involvement. I had no more cancer show up in the 15 years until June 04 when mets showed up in my lungs. In the year since, those mets have not grown or changed, except now for the questionable spine involvement again. Please try to make even a short trip to see your new grandchild. THere is so much hope and love and faith surrounding a new grandchild, and it will be such a blessing to you and Mel. We are all pulling for you and we won't be at all surprised to hear you are on top of it all again. Hugs, Tricia

[jojo]

Lisa, my heart just sank upon reading your post. I hope that you are not in too much pains.

Would it be possible at all, if you shortened your NJ trip & then take Abraxane maybe just a few days later (2 or 3, however long enough that your oncologist feels comfortable with your timeframe)?? I would talk to my oncologist about seeing if I could include the trip AND have Abraxane "timely".

If you don't go to NJ after all, you might feel double-guilty.... for missing the chance of meeting your granddaughter AND for having Mel stay back & miss his chance as well. Ask yourself how you would feel if you decided to forego the trip & start on Abraxane. Please talk more about this with Mel -- just don't do anything harsh that you might regret later.

You know, I'm sure that your child would completely understand if you were not to go, he/she would want you to focus on your health & continue being the strong fighter that you are! And you could always go to NJ another time in the near future.

And rely on your instincts; they are usually right.

I'm cheering on your side! Sending positive vibes your way.

[jojo]

Lisa, my heart just sank upon reading your post. I hope that you are not in too much pains.

Would it be possible at all, if you shortened your NJ trip & then take Abraxane maybe just a few days later (2 or 3, however long enough that your oncologist feels comfortable with your timeframe)?? I would talk to my oncologist about seeing if I could include the trip AND have Abraxane "timely".

You know, I'm sure that your child would completely understand if you were not to go, he/she would want you to focus on your health & continue being the strong fighter that you are! And you could always go to NJ another time in the near future.

And rely on your instincts; they are usually right. I'm sure that you will have an intelligent discussion(s) with Mel, your family & your medical team.

I'm cheering on your side! Sending positive vibes your way.

[Lisa]

Unfortunately, it will be the spinal issue that will keep me from going to NJ. If tomorrow's MRI shows it on the cord, I guess I'll have to have immediate surgery or radiation. Otherwise, the Abraxane issue wouldn't keep me from going.

Thank you all for your support! It really does help.

Love and light,

Lisa

[Rozebud]

Lisa - Keeping you in my prayers and hoping you can hug that little grandbaby really soon.....Rose

[StephN]

Dear Lisa -
This is a classic case of "cancer is sneaky and we have to outsmart it!"

We all share your initial shock as we completely empathize with all the emotions and anger and frustration that go along with the news you got. That could be any of us one day, and you have all our support and love to lean on.

Seems that your lymph system is the weak point, and that is kind of curious since your main organs seem to be in good shape. What do the docs have to say about that??

I know a couple of women here who have had good results from radiating a spine met or two. One is now NED for almost 2 years now.

And Abraxane is a good drug with some great trial results.

We all hold good thoughts for you.
Get that armor polished and ready for this next go round!

[*_Julie_*]

I know that you are going to beat this and back to your noraml self again to say your kind and encouraging words to all of us who need them. Please take care of your health first.

Julie

[pgill]

Lisa,

I am new to this journey (only 2 months), but beginning with stage 3c I know I may be where you are someday. I also have grandchildren and a new grandbaby coming in February. It is very difficult to reconcile the "ball and chain" feeling of treatment with the "lifeline" feeling. I do know that for me I really have to keep myself focused on the near future, what can I do today that makes my world better. I believe I have a wonderful future ahead (as do you), but I just allow it to be sort of fuzzy...the details will become clearer as I get there.

Is there any way you can bring that wonderful grandchild to you? Maybe you could help with the cost of the trip and everyone could have a celebration! That is the solution we are working on. It seems we must be very creative and use all our problem-solving skills when what we'd like to do is just sit for awhile.

I know from reading the discussion board what an inspiration you are to everyone here and I know you have more insight than I so take anything I say with a "new comer" flavor.

You and your family are in my prayers.

Peggy

[*_anne_*]

Dear Lisa,

I am sorry to hear you got some bad news. I have to say you have comforted most of the people on this board at sometime or other, including me. Don't think the worst. You just need another combo. I don't know your history, but Xeloda and Gemzar seem also good options. I don't know much about Abraxane except it has better penetration than Taxol. You will is strong and you will get through this. I will pray for you and your family. You know if it was my mom I would want her to focus first on her health, so don't feel guilty about the NJ trip. When you feel better everyone will be relieved and you have many happy years with your grandaughter.

Sending you all the best,
Anne

[Becky]

Lisa

I am thinking of you and sending vibes of wellness your way.

Best regards,

Becky

[*_lu ann_*]

Hi Lisa,

I'm having similar symptoms as you with my spine. I'm having numbness and tingling across my back, pain in my left arm, and tingling in my finger tips. I have a compression fracture in t-9 that was radiated at Cancer Treatment Centers of America in Northern Illinois. I'm going in Aug 9th for a total spine MRI. I've been off chemo for the last 3 months and will resume Aug 15th with a new Doctor and Treatment Center.

My husband and I are going to Hocking Hills next week to celebrate our 24th Wedding Anniversary. Five glorious days alone with my husband.

It scares me to think of the posibility of being paralyzed or dyeing from this disease. The way I deal with it is by telling myself that some day I will die, but it won't be today.

I will keep you in my prayers, Lu Ann.

[Lolly]

Lisa, it seems like we just have to keep on keeping on, don't we :)
I know you can't help but feel downhearted right now, but I think once you know where you stand in regards to the spinal issue you'll feel better just not being in limbo. You can then make a decision whether to go see the new baby now or later, so hang in there until you get the MRI results. I'll be hanging with you friend.

Love,
Lolly

[al from canada]

Dear Lisa,

This really sucks!!!!

Question...if there is progression then I would assume that we have a treatment failure. That being said, why on earth would the onc take you off Taxol and put you on Abrax. other than the fact that you can get higher doses. Isn't a second opinion warranted? There are so many "salvage" chemos available now! What have we been saying all along for years: GET A SECOND OPINION!

The latest stuff I scanned (not read) is about excellent results with Irinotechan and H and maybe something else like carbo. I will help you search this weekend as I am on a business trip right now.

As luck would have it: after a perfect liver screen 3 weeks ago today, Linda had elevated Alk Phos, AST and LDH today!. This one sares me as it came so fast. A CAT scan is planned for the week of August 15th. She had light-speed results with the H + xeloda I'm wondering if this isn't related to something else, ie drug effects, bone mets, ...... Don't mean to burden you with my problems when you already have more than your hands full.

However, I am already gearing-up for the nexyt stage (get the hint). As well, I posted a link of many of the successful chemo combos tonite. Check it out!

Love Al

[al from canada]

More..... read Jessica's post: http://www.her2support.org/forums/index.php?showtopic=21798
Al

[*_IRENE FROM TAMPA_*]

Lisa

I am sorry to hear about all that is happening to you -

If your trip to see your grand daughter is soon, why don't you go for a few day's before you start a new chemo? I feel this way, the reason we are all fighting so hard is to enjoy our families/doing the things we love, so if you feel ok to travel to see that little grand daughter I say go for it and then return and get started on your new chemo. If your travel time is not interferring with any of your test/chemo treatments, then I say GO. The enjoyment of seeing that baby will do you worlds of good.

I have just confirmed myself that I have "another" recurrence, this time in a lymph node around the pancreas/liver. Good news is it is not envolving my liver or pancreas which was my fear.

I will also be starting ABRAXANE this Friday (they have taken me off of Herceptin since I have had so many recurrences while on it) I have requested to be given the Abraxane on a weekly basis which would be three weeks on one off. Hoping that doing it in this fashion will save me from having such a strong dose given at one given time. My onc. agreed and said it will still work in the same way. We will see how that works.
I am studying up on a new drug called AVASTIN which works similar to Herceptin but through a vascular level, instead of cellular like Herceptin. If the Abraxane works for me, then maybe consider starting that after, unless there is something else new.

I heard on a new's report last night that a study being done on mice in which the blood supply is being cut off from feeding the tumor cell, is within MONTH'S to being tried on human's. This is very exciting new's.

Lisa, I just know that there is something out there for everyone of us, we just have to keep researching on our own, and working with our onc's to find the right one.

I pray for you and hope if you do start the Abraxane, it works for you.

Go see that baby if you can. The joy alone would be the best drug for you.

Irene

[Barbara H.]

Lisa, I was also upset for you to hear the mixed news. But remember, it is mixed. The major organs are clear. Also, the spinal issue is in your bones, not your spinal cord. I believe that is quite different than what Mary had. My mother has osteo or spinal stenosus, and develped foot and hand problems. She had back surgery last spring and is reborn. From what my oncologist tells me, breast cancer does not grow that fast, and it is hard for me to imagine that your doctors wouldn't let you go and that you couldn't wait with the new treatment. Perhaps they could give you one dose of radiation to push back the mets and then let you go.

Last year when I had mets to the lungs, liver and throughout, my oncologist gave me herceptin alone so that I could enjoy my daughter's wedding. He also wanted to see if Herceptin would work for me, and so far it has. Since I also had surgery for a 3 cm brain tumor, my greatest fear at the moment is eveytime I get the results of my 3 month MRI.

I am so happy for you to celebrate this new granddaughter. My daughter just celebrated her first anniversary this past weekend. I hope I live long enough to see grandchildren.

Again, try to work with your oncologists to see if they have a way to get you to NJ. NJ is in the US. There are hospitals there where you could go if a problem really arose, and it probably won't.

Best wishes,
Barbara H.
P.S. Lisa, I wrote this yesterday as soon as I read your post, and then a thunderstorm knocked out our cable until this morning and I couldn't send it. I got up and read all the posts. It is such a comfort on this website to see how so many of us care for you; I'm sure even the lurkers, who are not writing. Ultimately, you will make the best decision for you. As many have said, this is a road with different branches that we are all taking. Best wishes and we hope to see a picture at some point of you holding that granddaughter.

[AlaskaAngel]

Lisa,

I don't have any advice. I just want to say you are in my thoughts, and wish the choices were easier to make. Your posts at such times are some of the best mentoring I've seen, and appreciated all the more for knowing that often you haven't had a mentor yourself in finding ways to go forward.

Much love,

AlaskaAngel

[Christine]

Lisa
Sorry I haven't been posting lately. I wanted to call you very soon to hear some good reports and as you said "Damn it' iT WASN'T WHAT I EXPECTED! Keep searching ....Abraxane may be a good one to add, but not sure. There is also an injection to promote bone strength similar to Fosamax...I'm sure your Onc knows of it. Don't recall the name. Preventing a fracture is important, and of course getting the spinal tumors in remission. `I will be speaking to a neurosugeon in L.A. soon. Let me know if you have any ???'s to ask him.
My offer to come again to San Diego for a 2nd opinion still holds. My radiation Onc is in La Jolla. Mary was a different case with mets to the lining of the spinal cord and her Tx's were delayed because of late DX and TX'S. If you recall her Dr gave her a poor prognosis at least 6-8 months before she had pain, AND should have had better opinions to treat her condition earlier before her spinal cord progressed with tumors and compression.

Joe and I would like to wish you the best, and if necessary we are here for you,, Lisa.

Christine

[AlaskaAngel]

Christine are you thinking of pamidronate (Aredia)?

A.A.

[al from canada]

Hi Lisa,

Have you made any progress with decisions, etc.
Chritine's offer sounds pretty good and I would consider taking it. A new opinion may be what the doctor ordered.
Al.

[*_Bevie_*]

Hi Lisa, I am sorry to hear your latest news maybe at this time another opinion may be a good idea??? I agree I think it would be wonderful if they could bring the grandbaby to see you.

[Mary Ann from Wisconsin]

Dear Lisa, I have'nt written for awhile. I'm sorry to hear the news. I'll be praying for you.Keep smiling, someone here cares about you ,along with a whole lot of others. I'll light a candle in church for you on Sunday. Take care , and May God Bless You, Always, Mary Ann from Wisconsin

[mts]

Lisa- I look at your picture and I see me. Eventhough I don't know you , I do think about you. Please know I 'm sending as many good vibes as I can for you.
By the way, maybe you can't see your grandaughter, but perhaps you can get those cool little video phone things that record /send real time video to her. She will be able to hear your voice and see your face... I know its not the real thing, but close !

Maria