Another dumb question....

[duga35]

Maybe this has already been asked, but have any of you heard or know of any men that have taken Herceptin?

For some reason it just came to me today that out of all of the research I have done, I haven't seen an trials that included males.

Maybe it doesn't work for us.....

[AlaskaAngel]

I don't see anything dumb about that question, I think it is interesting. They have done at least 1 trial for men and trastuzumab for prostate cancer:

http://www.clinicaltrials.gov/ct2/sh...ab+male&rank=2

I just did a fast search so this is not at all conclusive, but found these, which are a bit puzzling:

http://www.malecare.com/male-breast-cancer_109.htm

http://www.meb.uni-bonn.de/cancer.gov/CDR0000062969.html

Here's more:

http://www.breastcancercare.org.uk/content.php?page_id=1102


"Men with breast cancer may also be given Herceptin. However, as all the studies that have been carried out so far have been on women, the specific benefits and side effects of Herceptin for men are not known."


and

<O
http://www.cancer.org/docroot/cri/co...y_stage_28.asp</O

[2KidMom]

In the Profiles in Courage section I saw a post from "preston45"...it was from 2005...he posted about being a male and taking Herceptin.

[RhondaH]

has it...was dx 9/06. Take care and God bless.

[duga35]

Thank you ladies.
I missed Preston's thread. I wonder how he is doing

[pattyz]

Hi Doug,

As to your question: bc in men is at such a low percentile that studies and trials would be difficult to achieve results. Or so it has appeared to me, after much research for my partner's own bc.

I'm a 'fully qualified' member here... but Lyle's bc is not Her2+. He is on Tamoxifen tho', since he is highly ER+ and PR+.

I think of the 2000 or so men that are dx'd with bc ea yr, a higher percent are 'only' hormonally postive; and not Her2+. In that case, trials would be even more difficult to do.

However, from all my research since Lyle's dx (June '07), the treatment of choice for men w/ bc is the same as for women.

Lyle was treated with chemo prior to his surgery in order to shrink his tumor, hoping for no chest wall involvement and good clear margins. Tho' tx with TAC was extremely difficult for him, the end result was what we had hoped for.....

We are both old farts, who now share the same oncologist. Lyle will be 71 the end of May and is 12 yrs older than I. His nipple discharge was his first 'sign', too. It became entirely compromised and reached the size of a large grape. But, he waited for approx. 6 mos. to let the cat out of the bag, to anyone, me included. worried I had enough on plate dealing with my brain mets.....

So, what is happening with your other issue/s? Those spots on brain and lung????

There are no dumb questions when it comes to bc issues, Doug! none.

Warmest wishes,
with hope,
pattyz

[duga35]

Hi Pattyz, thanks for talking to me! I didn't know that your husband had bc also. I think that makes 4 men here now that have it.

I still have not heard if any men are her2+++ and have taken Herceptin. I don't even know why I didn't ask my oncologist, but at my next appointment I will. Sometimes I feel like a real lab rat with the way people want to study me, but if it will help someone in the future than it's worth it. The company that does the BRCA test are offering to test both of my parents for free, and if I had any other family members under 50 who have had cancer can also be tested for free. I just found that out yesterday. Supposedly they found a weird mutation in the BRCA I gene that they have only seen 15 times. I wasn't surprised with everthing else that has happened with me since diagnosis,LOL. Everything about my case seems to have blown everyone's mind.

The spots on my brain are still there, but they said I do not have MS. I have a slight elevation in B12. I'm not being treated at all for that as the neurologist just wants to keep an eye on it. I'm scheduled for another MRI in a few months, but I might cancel it.

The spot on my lung was 5cm, and the radiologist and my oncologist think that it is a granuloma. They are just going to keep an eye on that for right now also. Hopefully they are right.

Like your husband, I've had a heck of a time with chemo also. My poor onc just doesn't know what to say to me anymore, he just shakes his head and says that he is sorry. The good thing about all of the side effects I've had is that the chemo nurses give me special treatment. I've became quite friendly with them,LOL

How is Lyle doing now? Hopefully you are both doing well!

Doug

[pattyz]

Hey Doug,

Ok. um... please, don't skip the brain MRi. Am glad they have taken MS off the table! But, another scan to brain is more baseline good info for your 'history'. And since you've already proven to be so sweetly 'UNIQUE'! I think it's a good idea to keep an eye on it, just as with your lung spot. OK?


Well...... you and Lyle would be a pair at the chemo center The nurses were pretty good to him, too! His humor and high flirting ways were winners for them. Plus, being a guy with bc... well you are, as Lyle sez: "minorities".

His hardest parts were his feeling so sick, low grade fever, no appetite, weight loss, loss of energy and stamina. He was in four times for IV's to replace fluids and electrolites.

After the first four rounds of the triple chemo, we dropped the A/C. And, reduced the dosage of the Taxotere, going then to one week on, one week off til he'd finished another four rounds.

(losing all his hair... well if you could hear him talk about the smooth hairless butt, oh my!)

I share this chemo info because there are ways to tweek your chemo protocol. Sometimes, even a slower infusion rate.

Oh, speaking of that: After an hour trying to find a vein to use the first time, he went in for a port.

He is now feeling quite well. This from Lyle to you: "It took three months to loose the 'chemo taste' in my mouth and that long before I felt like I'd regained a good amount of my strength." That was mostly accomplished by walking/hiking with our two 'fur-kids'.

He's had no obvious side effects of the Tamoxifen, thankfully.

He insisted on a sentinal node biopsy at surgery if all else seemed good to go. And it was. He's had no probs from that surgery. He did retain lots of fluid at mastectomy site for two months. Had that drained four times. Then the rest of the accumulation finally was reabsorbed.

Hope that was not overdose of information......

Honestly, I can't see why the addition of Herceptin wouldn't be indicated for you at some point. It is, afterall a targeted therapy. And you have the right gene bullseye for it to work. I had great success with Navelbine/Herceptin for my systemic mets back in 2002. The stuff works so much better in combination with a few chemo agents, rather than just by itself.

Keeping good thoughts and best wishes,
patty & Lyle

[duga35]

Hi Patty,
I am presently taking Herceptin, along with Taxotere and Carboplatin. I've had 2 treatments so far and I've went thru the same things as Lyle has. I didn't have the infusions this week, but today I kinda think I should have. I just woke up from sleeping 20 hours and I still feel like hell.
3 months for the taste buds to come back????? My one joy in life is eating and it takes 3 months to get the taste back????? Now I'm really going to pout. I haven't had much appetite since starting chemo, but the few times that I've been really hungry for something I take one bite and can't taste it!
I think that scientists need to work on having chemo treatment making everything taste like chocolate or pumpkin pie. Maybe people wouldn't complain so much. I know that I would certainly be in a better mood,LOL

[BonnieR]

Doug, I don't know about you "being in a better mood" but your sense of humor seems quite intact! That always helps. Keep us posted. And keep the faith.

[Bill]

Doug, you do have a great sense of humour. I wish I could help more. I'm sorry that You are having such a rough time. When you mentioned that you slept 20 hours and still woke up feeling like hell, it just made me think. I know that is because of the chemo. Having said that, prior to your chemo., did you ever have any of the classic symtoms of sleep apnea? Snoring, waking up tired even after a good nights sleep, feeling groggy or lethargic most mornings, falling asleep or feeling really drowzy throughout the day, unless actively moving? I have sleep apnea, and was not dx'ed until four years ago. I went in for a sleep study and they found that during the night, my blood oxygen level dropped to 72%. Oh, that's why I felt like hell every day when I woke up! Since then, I wear a CPAP (constant positive air pathway, I think) machine, and it has turned my life around. I think sleep apnea is often over-looked or misdiagnosed. Doug, I know right now it might not be feasible for you to spend the night in a sleep lab., but it might help. Most people don't want to do it, but I'm so glad I did. At least talk to your doctors about it. You have some of the attributes of someone that probably has sleep apnea. Keep us posted, Bill

[harrie]

Doug,
That is encouraging news about that area on your lung and also your brain. But be sure to keep up with the screenings just to make sure things are good.

What do you mean 3 MONTHS UNTIL YOU GET YOUR TASTE BACK??!! It surely was not that long for me! I think for about a wk post each tx of chemo my taste was out of whack, but after that things tasted ok again.

So what, are you halfway there now?

Harriecanarie

[pattyz]

Doug..... jeez.

I'm so sorry I screwed up here. Lyle's taste was back in no less than a month. He said just now that it was the taste of chemo lingering in his mouth/system that bothered him for about three months.

But, he was not on the same chemo as you are, either... and (much repeated refrain...) we are all a bit different in our experiences.

The one thing I left out accidentally was the diarrhea which has been a near constant, in less dramatic form, to this day.

I also apologize for being behind the curve with your current treatment and the TCH....

And I'm writing to you as if you have the energy or care about any of this, while feeling so ill...........so so sorry.

Lyle is a 'grazer' by nature. A small handful of double dip choc. covered nuts with his coffee in the morning is typical. He is back, that way, for the past few months. His stomach did shrink afterall. And the whole ordeal was just so hard on his system. He is 6ft, a normal near 200lbs, otherwise healthy almost 71yr old guy.

That sense of humor is just the ticket to get through. There may be few days here and there when you are just plain grumpy and cranky....screw humor. But, in the bigger picture it will be the best of medicines.

And rest as best you can. Maybe go in for that IV,too. When I told you of Lyle's changes in his chemo schedule and dosing, it was meant as a possible suggestion to you in your own circumstances. It doesn't hurt to ask your onc...

Hope you're resting somewhat comfortably right now...

patty

[Believe51]

Ed was on Herceptin for a while as you may see in his signature. It did not work for him but it does depend on the person. Right now I am doing research with our oncologist and Dana Farber with those same questions. Keep the faith 'ole pal>>Believe51

[duga35]

Bill, I've often wondered if I have sleep apnea. You maybe on to something there. My wife says that I don't snore though. I know that I do toss and turn quite a bit but I always chalked it up to stress.

Patty, thank god it was only a month! Living on Jolly Ranchers and water kinda sucks. Except I do think this is the best diet ever invented; If it tastes like crap, just spit it out cuz no use in wearing out your jaw muscles chewing up something that tastes like tree bark.

Diarrhea..........for the last 6 weeks I've been telling everyone to drop what they are doing and run out and buy stock in Charmin.

Harrie, I'm just about half way, I have 4 more treatments of the taxhercarbo and then another year of Herceptin.

Believe51, I've been reading all of the good news that you've posted about Ed, and it brought tears to my eyes because I was so happy for the both you! Don't give up the faith to hear the NED news, and I'll keep up my daily prayers for you guys. Please tell Ed I said hello, and that I know he is going to beat this. Just beacuse we have breast cancer doesn't mean that we are too girly to stop chewing nails and wearing steel toed boots to kick this cancer thing in the a$$,and we ain't about to let a thing like the big C get the best of us. This ain't no hill for a climber! It's a guy thing, he'll understand, believe me!

[Bill]

Doug, if you've often wondered if you have sleep apnea, then you should bring it up to your doc. At least discuss it. If you can spend a night in a sleep study ( really, it's not that big a deal) and they dx you with sleep apnea, it will help you big-time. If they say everything is fine, then you know there's one less thing to worry about. You can't lose. Doug, I think you need to pursue this. It's only one night and nothing weird happens, and chances are they will prescribe a CPAP machine for you to wear at night while you sleep, and you will feel so much better in the morning, and all day long. I think you need this. Bill