Onc made a mistake wants to start Herc before MUGA

snowyday · July 2008

Crickey, this morning I wss getting ready for a dental appointment this morning and I got a phone call from my cancer clinic they wanted to start me on Herceptin without a MUGA. Well I called them right back and told the NO. I had radiation on the left and was told that my heart was in the way a bit. Well what's a bit. So I explained to them that they are not starting me on Herceptin until the MUGA is back, and that they also told me they would be checking my other slides of my tumour. I'm in shock that they want to start me so quickly they made a big mistake for completely missing that report that showed I was her2 positive, but for crying out loud what are they thinking. I also am wondering if I will need a PICC again and I hope not as I couldn't stand the one I had to wear for months so I'm praying this stuff doesn't chew up veins like FEC and Docetaxo. I don't think I was wrong in my desicion. Any thoughts out there. Oh and the dental office wouldn't do any work on me until after they talked to my Onc, he told them that WBC counst don't go down with Herceptin but it says it can right on the pamphlet. Who is right? I have so many questions and I think I'm in a bit of shock that they are racing to fix there mistake thats a good thing but I think it should be done properly. HELP was I right.

TenderIsOurMight · July 2008

Snowy, it's your call.

Your oncologist is recognizing their oversight and now wants action. It's probably o.k. to start the Herceptin (which I never heard chews up your vein), and at the same time ensure that your oncologist sets up the Muga test to be done shortly. That way, if there is a low ejection fraction of your heart pump, your oncologist can taper the dose.

It would be good to get the Herceptin going, but I fully understand your caution. Left sided radiation in these newer days of treatment is felt to be associated with less common heart damage (they calculate and plot to minimize cardiac dosage).

I'm glad you have gotten their attention. You deserve it!

Tender

Watson · July 2008

Snowy,

It sounds like you and I are in the same boat as far as the Her2 not being picked up initially. I was dx in May 2005 and my current onc had that tumor retested and I've been very slightly Her2 pos since the beginning. My original oncologist didn't think it was positive enough to be considered her2pos. Who knows?

I have decided not to be angry or stressed about this. Who knows if it would have made a difference at this point anyhow? It really does no good to be stressed about the past and something you cannot change. I can just feel the anxiety jumping from your posts.

My oncologist did the Muga scan before Herceptin. It's pretty common for the dentist to get permission from oncologist before doing any work. Try to relax and look forward. If you don't trust this oncologist or can't get past thinking he made a mistake, maybe you should switch for peace of mind.

Hugs,

Watson

snowyday · July 2008

Thanbks Tender, the appointment has been made for July 16th for the MUGA. And Watson, your'e absoletly right the anxiety is jumping off the page. It's a shocker thinking that your one thing and then Boom your not. So I have to let time take it's course and let the shock of it wear off. I don't think I'll switch the Onc it will make no difference anyways as at my cancer clinic the onc's see one anther's patients all the time. Actually thorough my whold previous treatment I saw my actual onc only once. And I understand they are valiantly trying to correct the error they made but I still want everything done step by step and I'm just not willing to take any chances. I want this Herceptin to work and work well and I want my body to be ready for it and have it hopefully fix things once and for all. I'm sorry your HER 2 was not picked up as well when you were initially diagnosed, but happy that you have accepted the changes easier than me.

And Tender I'm also relieved to know that herceptin doesn't chew up the viens like the previous chemo did with me.

I'm a bit angry I'll admit that but I was so misdiagnosed the first time by another place that it's sort of like this to me. Okay the random bad shit is happening so why the heck can't the ranadom good shit happen to me. Maybe I will buy a lotto ticket and get lucky. (RIGHT).

I just need some time and I will bitch and complain until I come to grips with it. Will go to I'm bitchy I moan and groan anyway from now on.

Hugs back

TammyLou · July 2008

snowday, I'm confused by your signature.

You have mets somewhere?

Tammy Lou

Watson · July 2008

Snowy,

Vent it girl! Get it out! lol

And I think you should buy a lottery ticket. Ya never know~

Watson

coonie · July 2008

I was wondering about the Muga? I've had 3 so far since starting my treatment. The first numbers were 61 - the next time it went down to 57 ---- the last time it stayed at 57. Are these numbers normal or average? I'm ashamed to say it, but I haven't done much research on this test. Any feedback on this? thanks a bunch!

Lisa

AnnNYC · July 2008

Lisa, 60 is a typical ejection fraction at rest. Anything above 50 is considered normal.

Here's a link to a description of MUGA scans (it refers to monitoring chemo with Adriamycin, but the description of the MUGA test, what it measures, and what is a normal number is valid for whatever reason the MUGA scan is being done).

Snowy, I feel for you -- and I agree with Watson that you should buy a lottery ticket!

snowyday · July 2008

Tammy LOU, I have two new cysts on my kidneys and three in the liver, no one has biopsied them as they said that it's hard to do and is really painful. So now that they have made this error with my her2, I'm going to ask them to MRI my liver and kidneys. So in answer to your question I was told the it was mets then told they were nothing to worry about then the kidney cysts show up on an ultrasound. Hope that answers your curiosity.

anneshirley · July 2008

Snowy--I think you've made the right decision to do a MUGA first before starting herceptin. It's important to have a baseline without interference by the drug. Hopefully, you can get your results immediately and start the herceptin the next day (or so). I didn't have a port during herceptin but it was getting more difficult towards the end to find a decent vein. I'd probably need a port in the future if I ever have to go through this again--hope not!

Lisa--as Ann says 60 is normal and so is 57. My first was 57 and three months later, second MUGA, was 60; and last MUGA was 60 as well. The variation between 60 and 57 is nothing to worry about, or so said my cardiologist.

Snowy--good luck and a good MUGA.

snowyday · July 2008

I'm wondering about how they are going to give me herceptin for a year. Yesterday had my MUGA and when they reinjected the blood including the isotopes my vien blew and did it ever hurt, I don't want to wear a PICC or PORT for year so I am hoping that I can talk them into putting it into leg veins. Don't know if they will but I'm going to try. I wasn't to worried about this as everyone said herceptin wasn't to hard on the veins but with the FEC then Taxols my viens all blew. After yesterday I'm really concerned again. Here's hoping. Still don't have the results from the MUGA whcih also has me confused as the tech told me the heart pictures were going online right away to my onc.

BMac · July 2008

Dear Snowy, I too had FEC followed by Taxotare (which is when I started Herceptin). I had a port put in before my second chemo but it was removed when I had my bilat mast on April 30th. I was dreading the thought of having another one put in...just having to go throught that again. Anyway the nurse said no need as Herceptin isn't hard on the veins and, so far, so good. I've now finished 8 so I'm well on my way.

jembs · July 2008

Hi Snowy, I had fecso they talked me into the picc and lied to me. My her2 was + then - then - and then+ again so I feel for you. They were booking the surgeon for a port and I begged them to let me try. Like you I couldn't see a year with a port - you have absolutely no time off. I actually told them I wouldn't have it if they insisted on the port. We did it one treatment at a time, sometimes it took a bunch of pokes and a couple of hours but worth it to me. The herceptin is not hard on your viens. The muga's are no fun - they were tough to get through, but I did. I'll pray

for you. I am glad I went through with it. TC

snowyday · July 2008

Thanks for your support ladies, I really appreciate, I have a question, and it may sound dumb, but since yesterday, I've had a splitting headache, worse than normal with alot of nausea, really bad nausea. I'm wondering if the isotopes are finally catching up with me. I haven't eaten anything but ice cream and fruit cocktail, so It couldn't be a food borne bug, just wondering if anyone else has had this or is it just weird co-incidence.

Also I am going to ask them to do the infusion in my legs instead of arms and refuse to take it if they don't try, the way I see it is a vien, is a vien, is a vien. Huneb, I'm glad you managed to get through the treatment without a port, I can't imagine one for a year so I 'm glad to hear that you managed to do it.

Yeserday when my vein blew so easily just reinjection my own blood and the isotope it really had me thinking. I also wondering why I haven't heard from the hospital as the tech said that the pictures of the MUGA would be online and my onc would see them right away, it's got me curious they wanted to rush everything and now I haven't heard a thing, I will call tomorrow, mind you I'm not in a rush to be on herceptin although it's supposed to be easy to take. I' babbling and need to go back to sleep. Goodnight ladies and everyone have a wonderful summers' eve.

snowyday · July 2008

Sorry I repeatd myself bloody tired!

Caya · July 2008

Snowy,

Have you thought of getting a port? I had mine for my chemo and year of Herceptin. I could not have done it without it. They used it for blood draws also.

nitewind · July 2008

Snowy, just wondering why you dread the port so much? I couldn't have made it without mine. After a while, I forgot it was there. It sure made things easier for me, I finished my year of herceptin this past December and had the port removed in March. I got my infusions of herceptin every Friday and the port made it so much easier on me. I hope you will rethink the port, it seems that the idea of using your legs or feet would be very painful.

Good luck to you in whichever way you go.

Hugs

Susan

henny · July 2008

Hi Snowy

I too have a port. I had it put in when I had the bilat mast before chemo and Herceptin. Using the port just involved a little pinch each time it was used but it really took the anxiety out of thinking about getting stuck. If you want to use your leg or feet veins , they may be really good. Find a nurse or technician who is comfortable with using leg and feet veins. Most aren't used to using them and are a little reluctant. I do MUGA scans(among other scans) for a living and personally am ok to use feet if there isn't an alternative.

The MUGA you had doesn't have any lasting effects. The isotope and tin that binds it to the red cells is out of your system pretty fast. Could your headache be from the stress of dealing with all this cr-p?

Sleep well tonight and feel good

Henny

snowyday · July 2008

I suppose I dread the port to so much because I saw this big white thing on a womens chest and it just looked so cumbersome. I'm a clutz and can just picture myself pulling and tugging at the thing in winter. It just looks so inavasive thats what bugs me about it and to have it cleaned weekly. Maybe I'm jumping the gun I still haven't heard about my MUGA so I think I'm just not going to think about it anymore.

Henny you were right, I do feel better today, it probably was just nerves, thanks.

henny · July 2008

My port is very small-about 1/2 inch. I feel a small bump from it about 2 inches below my collar bone. It's been 1 1/2 years since I had it put in and you can hardly see the small scar.Sometimes the skin is sensitive and a little sore but it beats the heck out of having chemo in my veins. I swim, exercise and have complete movement on that side.

I do think almost anything is doable as long as you have all the info to make a decision that feels right.

Henny

coonie · July 2008

I had a port put in for chemo to begin last December. No problems at all. When I had my bilateral mastectomy/hysterectomy they were able to leave the port in place since I will be doing Herceptin until January.

lisettemac · July 2008

I also refused the port. No reason, other than I wasn't having any more surgery. Was very stubborn about it, frankly. Onc said no worries, we'd see how it went. I lost one or two veins, but managed to do ACT dose dense and 1 yr of herceptin without it. It can be done.

oldcat46 · July 2008

Snowy... I can honestly say "I love my port." It wasn't any big deal to get, it never hurts or irritates, it's in a location below my collarbone where it isn't easily seen, and best of all it saves me from using up the veins in my arm. I've had it since Sept. 2007 and will keep it past December 2008 when I finish Herceptin. Please think about it because it makes everything so much easier. I don't use it for blood draws but it's very handy for CT scans. For MRI's and bone scans, they use my arm veins. Also, I had an echo before I started Adriamycin and also every three months until the Herceptin is done. Many blessings to you !!!

snowyday · July 2008

Okay the port I saw on this women at the hospital was big it wasn't 1/2 inch, it was big like a white plastic thing that looked almost 2 inches square. Can anyone show me a picture of their port maybe it won't be to bad, 1/2 I could stand but any bigger and they can go for my legs, besides if they blew a few viens down there it will get rid of spider viens.

coonie · July 2008

Snowyday---you might want to do a google search on the port implants. Mine is about the size of a quarter, and honestly, I forget it's there sometimes. They can give you numbing cream to rub on before you get treatment, or use the "cold stuff". It's much less painful than trying to get in the veins. That's my personal opinion.

Anonymous · July 2008

Snowy: Its raining here and I have just been surfing different threads here on bco. Im HER2+ and did get some herceptin myself. I too was told initially I was her2 negative and then 8 days later I was told I was positive. At least they caught it sooner for me than it seems like for some of you. First I wanted to send you a big hug, because Im so sorry this has just been thrown at you.

I had a port. It was the size of a quarter. I thought it was a Godsend for infusions, but I still hated the fact I needed it. Blood draws and infusions in the legs and feet can be difficult and if you need to get herceptin for a year - you might want to consider the port.

I had a muga scan before I started herceptin. Once upon a time the protocol called for mugas before and every 3 months during treatment. I dont know if that has changed or not. When I had my 3 month muga my EF went from 67 to 48%. My herceptin was stopped. That was three years ago and Im doing pretty good so far. Good luck with your treatment, I didnt have any side effects to the herceptin other than the EF.

Nicki

coonie · July 2008

chemosabi----I'm doing Herceptin, and my doctor is requiring a muga every 3 months....so the protocol is still the same. At least it is for me. I haven't had any side effects from Herceptin either. My muga went from 61 to 57. I have my next one in August, so I'm hoping it will stay the same.

Lisa

snowyday · July 2008

I think my onc was just trying to hurry up and get me on Herceptin because they made such an error with my path reports. But, it is beyond me that the supplementary report was there the whole time and they ignored it. I know they read it, because I asked for my surgical path reports numerous times, and each time they made up some excuse. Finally it got to the point where they were going to mail it to me but they didn't. I know why now. And I think that's what is angering me so much over this complete fiasco. When I look back at my posts and read how many times I requested my reports I'm stunned by the amount of times they ignored me. So the onc wanted to get me on herceptin fast, and I suppose he didn't know that I knew I needed a MUGA scan first. I wonder what my EF is, and really can't wait to find out on Tues. It seems strange to me that they were rushing to get this fixed so fast and now boom I hear nothing. Makes me wonder. My sister is coming into town Tues which is good because I'll have her there to keep my temper in check when I see my onc. Aug 1 I have to have another mammogram and Aug 5th I have an ultrasound from the bi-mam I had on June 18th. I really feel like just telling them show me the cancer and I will take the herceptin. I don't want it just because they goofed up. Shit I said earlier I would just shut up and do it but I just keep thinking about how they wouldn't give me the path reports so now I don't want any treatment unless it's backed up in black and white. Also I'm wondering how many people with NER2 ended up NED without herceptin, was it bad. I mean just on these boards? Chemosabi what is the accepted EF on MUGA's does anyone know? I don't want to go in there with a low one and have them try it on me and go kerplunk. And the damn ONC said there was no problem with WBC's but it's there on my pamphlet, along with puking and headaches and heart failure. I just don't trust them anymore and I'm wondering if I should go to Princess Margaret instead now. I am so damn confused and pissed. lc4909 your EF numbers look pretty good but they still dropped and I really hope they stay put, good luck with that. Chemosabi, I hope yours go up is there anything they recommended to get them up there again? Geeeeezzzz I thought really hoped the worst was over.

Onc made a mistake wants to start Herc before MUGA

Comments

Categories