Bad MUGA scan might mean no herceptin?

Nina · 02-23-2010, 04:41 PM

Just had my first visit with oncologist yesterday. Thought I was prepared because I had been reading up on what treatment to expect. She talked about TCH for 18 weeks, then herceptin with aromatase (sp?) inhibitor and radiation after chemo finished. No surprises there. Then she said I had to get a MUGA scan to be sure I qualified to take herceptin. WHAT? If herceptin is the miracle drug that will save a HER2+ person, then what happens if you cannot take it because your heart is not strong enough? Do you then have a choice of dying from heart disease or from cancer? What are the chances that my heart will fail the test? I am overweight, but have never had any issues. Grandparents have had cardiac problems and have died from them - but 20+ years past my age of 57. I was afraid of the chemo but now I am truly afraid of dying.

Joe · 02-23-2010, 06:19 PM

Nina,

Don't worry !!. Herceptin does have some cardiotoxicity. Your onc should order a MUGA scan before you start treatment. Average MUGA scores tend to be in the 55-65 range. MOST people will be in that range.

Your MUGA will drop somewhat during treatment but you will be monitored. If it drops below 50, an oncologist will discontinue Herceptin temporarily. The heart usually bounces back.

Warmest Regards
Joe

ElaineM · 02-23-2010, 09:18 PM

Don't worry. It can happen, but that does not mean it will happen. If it does the doc will probably suggest you take a couple weeks break from the Herceptin.

chrisy · 02-24-2010, 12:43 PM

Don't worry,
You have not mentioned any prior cardiac problems for yourself, so there is no reason to expect you will not be in the normal range.

You are getting a baseline measurement of your heart function (LVEF - left ventricle ejection fraction) which should be within normal range. During the course of treatment, mine has gone up and down, but still always stayed in the normal range.

Dakini52 · 02-24-2010, 01:34 PM

They do test your heart on a pretty regular basis especially when you first begin treatment. If the MUGA drops too low they would probably take you off the Herceptin for awhile to see how your heart recovers and then hopefully begin the treatments again. Have they discussed your taking Tykerb? It is another antibody therapy that works a little differently than Herceptin. Unfortunately it can also cause heart damage.

MJo · 02-24-2010, 02:33 PM

I had to stop due to MUGA drop, but I got in 9 months of Herceptin and I trust that did the trick for me. My friend was Stage 3b and her MUGA dropped to 43 during Herceptin, but they kept giving it to her due to her stage. She's NED 5 years later and healthy. I think you'll do just fine. You will be carefully monitored.

Marlys · 02-25-2010, 01:42 PM

Nina,
I believe we are not completely unable to do something about this. I paid attention to what
I read here and started taking CO Enzyme Q 10 as soon as I my first MUGA went down. I took 150mgm daily (only because that was the dose that Costco sold) and my next MUGA actually went up to normal range and stayed there. My oncologist finally decided I didn't need regular MUGA scans. I still take CO Enzyme Q10 and my heart is great. P.S. I am 72 years old, a former smoker and overweight so I am pleased with my current cardiac status.
Love & hugs,
Marlys

Nina · 02-25-2010, 02:20 PM

Marlys - That is reassuring!! I have been taking CoEnzyme Q10 (200 mg daily) for several years as recommended by my migraine doctor. Maybe my MUGA scan will be good! Thank you for the encouraging words. That makes me feel more hopeful. I am such a worrier that when I heard about a test that would prevent me from taking herceptin I immediately thought it would be my rotten luck to fail it. Thank you so much!!!

curryalso · 02-25-2010, 02:59 PM

I'm 65, former smoker and a worrier. My muga was fine. Don't worry.

02-25-2010, 03:34 PM

T-DM1/PERTUZUMAB
TO:Chrisy-
Chrisy, in your medical narrative you state:
1/8, progrssion in liver.
2/08, T-DM1 TRIAL
8/08, NED
9/09, NED
2/10, NED
In a previous entry you stated that you were also on PERTUZUMAB. Was the PERTUZUMAB introduced in your protocoll, to you, while you were NED? Or was it because of a reoccurance [a progression of your original desease under which you started the T-DM1 TRIAL]? At what point did you start PERTUZUMAB in your above medical sequence? It was my understanding that if you are NED you do not have to take the PERTUZUMAB. Did you personally elect to take it, even though you were NED? T-DM1 has been great for me so far, but PERTUZUMAB freightens me since it is still in Phase I, with no clinical history to it's effects, side effects etc. etc. [at least that is what my Study doctor says]. Could you please tell me what made you make up your mind to accept PERTUZUMAB, if in fact you were NED when you accepted it? I truly need your help with a response from you. My sincerest thanks. Angela

Dakini52 · 02-25-2010, 04:13 PM

Excellent information. I take a number of supplements but not CO Enzyme Q10 - I will add it to the arsenal ;-)

chrisy · 02-25-2010, 05:26 PM

ANGELA
Hi,

I've never been on pertuzumab, or in the protocol that had pertuzumab. Only Trastuzumab (Herceptin) in it's plain vanilla or souped up TDM1 form.

I've posted replies on various threads about TDM1 studies that have pertuzumab arms.

I probably said I would love to try that combination, and I would, because of the potential blocking of multiple HER pathways. I've seen many discussions of this "total blockade" approach which some researchers believe is key to an actual cure.

There have actually been several studies of pertuzumab in combination with various things, but as of yet it is not FDA approved. There is currently a Phase III study ongoing with I think Pertuzumab vs. Herceptin. So it is not a completely unknown agent as far as side effects or even hints of efficacy. It's just not a "proven" therapy.

There have been smaller studies, here is a link to the press release on one, of Pertuzumab + Herceptin which shows promise.
http://www.roche.com/home/inv-update-2008-05-30a

If I got to design my own clinical trial, for people who do well on TDM1 - even to NED - I would go for a shuffle of TDM1, Herceptin and/or Tykerb, and Pertuzumab or something that would target Her3. But nobody would ever design a trial like that!

02-25-2010, 07:02 PM

Dear Chrisy:
My sincerest thanks for your immediate reply. I am computer illiterate that is why my note to you ended up in the wrong place.
I gather from your reply that we must be in totally different T-DM1 studies. As said, I have been doing exellently on T-DM1 but a recent required bone scan showed a possible progression on one of my spine [bone] mets which afterwards turned out to be inacurate [no progression]. The study I am in, requires that upon any progression of the original cancer, [not a new tipe of cancer], in my case, breast, metastasized to bone/skin/lymph nodes, stage IV, Her2+++, that the patient accepts PERTUZUMAB in addition to the T-DM1 or alse "they are immediately excluded from the Trial". I dont write in this site, or any where alse, but from time to time I read it among other HER2NEU sites. I am, I believe in the same T-DM1 Study that Vicky.h is in, whom seemed to do well with just T-DM1 but appears not to do to well with the addition of PERTUZUMAB to her T-DM1. I am just scared stiff of PERTUZUMAB, rtegardless of it's claims of blockage of the Her3 pathways.
I would certainly love to hear from anyone alse that may be on the same tipe of Study that I am in, that have accepted PERTUZUMAB because of progression, on how they are doing [any further progression/new cancer etc etc. Chrisy, I sincerely thank you again. Angela

chrisy · 02-25-2010, 11:18 PM

Angela,
It was just a stroke of luck I saw your post - I've not been paying such close attention to the forum lately. And I certainly wasn't expecting to see a question directed my way on this thread

It seems you in fact do NOT have progression, so for the time being anyway the pertuzumab is not an issue, is it? If they are making it an issue I think you could challenge that. Are they pushing you to go on Pertuzumab? At worst, the evidence of possible progression is inconclusive and needs to be clarified. At best, it is not progression, the TDM1 is working and you should not have to add the pertuzumab.

I still, from my perspective, do not fear pertuzumab. Everyone responds differently to any given therapy; one person will not respond or have terrible side effects where the next person might do fine. But with new combinations, it's especially hard to know.

I am in a different study than you are. I'm on TDM1 as a single agent, so have no other TDM1 options if it stops working. Maybe from that perspective, I'd view pertuzumab as a possible safety net, but I have been watching it anyway for quite some time.

In your study, I might look at it this way: you are on TDM1 and are doing well on it. If you have progression, that is a sign that you probably need to make some change - in your case, adding Pertuzumab or dropping from the trial to pursue other options. As long as the TDM1 is working, great! If it is not working well, you will have to make choices anyway.

Dakini52 · 02-26-2010, 01:00 PM

another supplement that you might want to consider taking is D-Ribose. It has shown to have a positive effect on heart function. Here's a link to additional information: http://www.squidoo.com/d-ribose

02-26-2010, 03:02 PM

Dear Chrisy: again thank you for your replies to me.I absolutely agree with you that T-DM1 should be coupled with maybe TYKERB [in order to breach the brain blood barrier] or, I think with NERATINIB.
No, I have not been NED; on T-DM1 my skin mets have completely gone, my bone mets, are almost there, as well as all my lymph nodes mets had almost all clearde up, and my 27/29 tumor markers at 27. Yes PERTUZUMAB WAS PUSHED ON ME. Subject to a recent bone scan The Study Dr. insisted his reading of the bone scan showed progression. I had it looked at by outside oncologyst and a radiologist [I did not want to go on PERTUZUMAB], whom stated there was no progression, just healing. The study Dr., insisted that his decision was final, and that I had to take PERTUZUMAB or get out of the study.
Just today it was further confirmed by another local authority in radiology that there was no progression just bone healing. I so desperatewly wanted to stay on T-DM1 only! My mind kept going back to what happened to Vickyh and Irene from Tampa!...I have not done well since the addition of PERTUZUMAB to T-DM1. i am thinking of putting myself in the hands of M.D. Anderson at this point. Again thank you. I just needed to further explain myself to you just once more since you have been so kind to answer my inquiries.My deepest congratulation on your success with T-DM1. It is a great drug. Angela

Nina · 03-23-2010, 07:54 AM

Hey everyone,
The oncologist told me my MUGA results yesterday and the score was 70! All that worry for nothing! I surely have some leeway for any possible damage from the Herceptin. Thanks for those of you who responded to my original post.
Nina

BonnieR · 03-23-2010, 10:47 AM

Hi Nina! I was just about to post something reassuring when I see that you have already gotten your results. This is an example of how our minds can run with dire thoughts. I did it all the time!Still do. Which is why a place like this board is so helpful. People can offer reassurance
The MUGA (I had echocardiograms) is mostly to establish a baseline so they can monitor your heart during treatment about every 3 months. And as others have said, they can d/c the Herceptin temporarily if needed down the line.
Keep the faith.