When it rains it doesn't always pour- right?

KristinSchwick · 06-21-2012, 08:00 PM

Just got my tumor markers back for this month and they are up alot again- from 107 to now 129. Last week (prior to getting these numbers), my oncologist talked up pertuzumab and TDM1, probably being able to get on TDM1 more easily than pertuzumab. So I'm hoping that I can start on that soon- it goes without saying- that I really really really want to get to NED.

In other news (and this has me very worried), my husband has been having alot of strange symptoms- tingling in his fingers for a few weeks, some blurry vision in the AM, and a very stiff knee. He and now I are paranoid that it is MS. Two of his biological aunts have MS and I'm so afraid that is what is causing his symptoms. He has a doctor's appointment tomorrow (just a family care doc) so we can get a referral for a neurologist.

I just hope we are hypochondriacs!!!! Please chime in with TDM-1 successes and encounters with tingly fingers/MS.

Pray · 06-21-2012, 08:31 PM

Kristin, I don't have info. for you but I do have hope and prayers for you and your husband, that you may get tdm1 and your husband does not have MS! Gods blessings to you and your beautiful little family.

I'm sure someone with exp. will chime in soon.

JennyB · 06-21-2012, 08:59 PM

Many hopes that you get TDM-1 and no MS for your husband either!

Fingers crossed and lots of hugs

Jenny

caya · 06-22-2012, 05:39 AM

Kristin, my brother had symptoms like your husband - it turned out his Vitamin B12 levels were drastically low, they call it pernicious anemia. He had a brain scan which showed "something", the neurologist thought it was MS, but the GP said no it was the pernicious anemia. And it's 4 years later now, and my brother is fine because he takes daily sublingual B12 capsules. A simple blood test will determine the levels, and if deficient, one can either take oral sublingual pills or get the shots.
I myself am low in Vitamin B12 too, so I get the shot about once every 6 weeks.
Of course with two biological aunts with MS, you have to check it out, but please know about this other possibility.

I hope you get the TDM1 ASAP.

all the best
caya

KristinSchwick · 06-22-2012, 05:53 AM

Oh Caya,
Thank you sooooo much for this wonderful story about your brother. I'm so hopeful that a vitamin deficiency is all he has- as he never takes multivitamins nor does he (or I) eat enough veggies (about 1 serving/day). He also started eating flax seed (1 teaspoon/day) and we thought maybe that started something. Any thoughts on flax?
Kristin

KDR · 06-22-2012, 07:04 AM

Kristin,
I will be thinking of you and sending warm, positive vibes. I think stress is the culprit with your husband. Wishing you well,
Karen

karen z · 06-22-2012, 07:33 AM

No, it doesn't.
Good luck and best wishes coming your way.
karen z

Shobha · 06-22-2012, 08:18 AM

Sending my heartfelt prayers to you. Wishing you return to NED - god bless!

KristinSchwick · 06-22-2012, 12:03 PM

So I just got a call from my oncologist's nurse about the elevated tumor markers and she says that he wants to wait and see what next month's markers do. Grrrrrr, and to top it off- I can't get TDM1 yet. I'm torn- do I insist on changing to a new therapy now, or can I trust my doctor that within a month either 1) the numbers will start falling OR 2) He'll start me on TDM1 or pertuzumab ??!?!?!! I hate these situations where we have to be our own advocate, I've been here before- like when my family doc said that my lemon size tumor was a plugged duct, I wish I would have pushed her for that mammo immediately.

So ladies, please chime in with whether your numbers after starting an endocrine therapy briefly went up and then (fingers crossed) went down again. Since my ovary removal my numbers went from 96 (before surgery) to 107 (1 month after surgery) and now to 129 (2 months since surgery). Has anyone ever seen it where after surgery the tumor markers flare and then take a dive?

Help, suggestions? Feedback! Thanks in advance.

Joan M · 06-22-2012, 01:15 PM

Kristin,

Perhaps you should "push" your onc for pertuzumab. The FDA approved the drug on the merits of the CLEOPATRA trial -- first-line therapy -- but that doesn't mean your onc can't try to get it for you anyway. It's really a matter of your insurance company approving it. That's the dilemma. This is the "fight." Not your onc ordering it. We're in the trenches.

Many chemos (as well as other drugs) are prescribed off-label (I think up to 70%), which means for a use other than exactly what the FDA-approved them for (meaning approval based on the trial's criteria). Oncs sometimes push for an available drug, and even deal with the insurance carriers, as carriers might use a the trial as a guideline to determine whether to approval a treatment.

Enrollees in the EMILIA trial, however, were first-, second-, and third-line. First-line meant survivors who had become metastatic within 6 months of taking adjuvant chemo that included trastuzumab. Hopefully, T-DM1 will be available very soon.

You could ask your onc to order pertuzumab to see what happens. If the insurance company turns you down, you could then appeal.

I'm sending good vibes to you and your husband that all will be well.

Joan

yanyan · 06-22-2012, 10:44 PM

Hi Kristen! Hope everything works out and your Tumor maker will stabilize. But remember it is not all accurate.inflammation can cause a rise too. In fact my tm 27.29 was normal at
31 when dx with stage 3c. I don't know much about how to qualify for tdm1. Others will chime in and offer more suggestions. Sending you positive vibes!

Becky · 06-23-2012, 08:06 AM

Another thing you can do is split the difference on the blood draw and get your tumor markers done again in 2 weeks and see where they are.

Joan M · 06-24-2012, 07:56 AM

Kristin,

Just a case in point, as a follow-up to my earlier post about off-label prescriptions.

When I had stage II bc in 2003, I took Herceptin off-label rather than enroll in the adjuvant Herceptin trial (I had the same protocol as the trial for those in the arm that received Herceptin). Herceptin had first been FDA-approved in the late 90s for only metastatic bc, but my insurance company approved the drug for me for an entire year even though the adjuvant trial was ongoing at that time. They never said they weren't going to pay for the drug because it had been approved for only metastatic disease, and I was taking it in the adjuvant setting. But that was my insurance carrier's taken on it, another insurer might have denied coverage.

Joan