very frightened already

[rinaina]

This is my second post on this newcomer's site. I believe in order to be your own best advocate you must read and become extremely knowledgable and having been in the medical field prior to my retirement 4 years ago, I grasp things very well. However, I am getting more and more frightened by what I read in regards to Herceptin treatments, the side effects, the what if's if you can't continue taking it. I just had a lumpectomy almost 4 weeks ago, stage 1, grade3, 1.4cm tumor, her2+, estrogen and progestin negative, nodes negative and clean margins. I realize grade 3 and her2+ means my b.c. is a very aggresive type and reoccurences are a reality especially if I don't take the herceptin. I am getting more and more scared about the side effects I read about in so many of you and yet I am also so afraid that if my body can't tolerate herceptin that I will get reoccurences and or metatises. This is all still so unreal to me....that I got this her2+ fueled b.c. and that my prognosis sounds like it isn't all that great. Can anyone share anything positive with me? Can we be long living survivors with this type of cancer? Thanks for your help.
Rinaina

[Bev]

Hi,

I'm just responding until someone more knowledgeable comes along. You have a lot of positives going for you stage 1 and and a later age of diagnosis, I'm assuming because you are retired.

I've been doing herceptin since Nov 05 and no real side effects. Some studies show if you can do it for as little as 9 weeks, you will benefit. Some stage 4's here have been on it for 8 years or so.

Keep reading all you can. I think you'll feel better as time goes on. Good Luck, BB

[rinaina]

thanks for replying and it is good to hear many have been here for that long. guess our emotions are run sometimes by only the bad we hear. i try to keep things in perspective but sometimes it is difficult. i am 54 postmenapausal by the way.
rinaina

[janet/FL]

Rinaina
Besides Herceptin, what chemo drugs are the doctors recommending?
Janet

[mts]

Rinaina-
One thing about this website is that you will read many details about any side-effect to Herceptin. And at the same time realize that these side-effects are nothing compared to the advantages Herceptin may provide. You do have an excellent prognosis... your cancer was caught early. I felt exactly like you do now- confused, overwhelmed and just plain scared. I wondered when I would reach the point where I no longer felt the burden of having cancer... I feel like I have reached that point. Yes, I have side effects form the herceptin- it makes me angry that my skin is itchy, or that I have a crust growing in my nose- but it is absolutely tolerable. Give yourself time to inform yourself as much as possible- know you are not alone on this journey and remember, although everyone reacts differently to Herceptin- the vast majority would not trade it in for anything!
Please keep us posted and your decision- and stay positive (I know its difficult) - but you will get through this!
Maria

[rinaina]

Thank you for your responses. I do know that having the drug herceptin is a wonderful thing and I'm thankful it is available because I know it is a her2+ patients savior. I guess I am just right now so overwhelmed with the serious side effects that I read so much about both in researching and in posts on here that it has frightened me. I have every intention of doing and taking whatever my outstanding oncolgist decides for me including taking herceptin. I just don't want anything terrrible to happen. I am not concerned with the smaller nuisance side effects such as crusty nose, itchy skin or even joint pain, (heck I have joint pain everyday of my life), it is the biggies that worry me. I realize it is only a very very small percentage that get these major side effects,(ie;the heart), but hey, only 20-30%of breast cancers are her2+ and I fell in that category. Sorry to whine and carry on, I am just afraid of the unknown I guess. Not sure about what chemo, will find out most likely on Thursday. Will keep you posted.
Sincerely,
Rinaina

[SherryS]

Rinaina, you aren't whining -- at all. You are expressing your deepest fears and your concerns, and you have the right to do that. The part about the heart scares everyone I think, but the muga scans are painless and they are good to have to keep track of how the heart is responding. I have heart disease in my family too. On both sides -- all of my grandparents (w/the exception of one grandmother who died of breast cancer to the liver), and both my parents (as well as an uncle) have all died of heart disease. So I've spent the better part of my adult life worrying about the heart, doing all the "right" things to protect my heart (I'm 49). I knew that bc might be something I'd have to worry about but concentrated more on the heart...and I did have some heart scares at the time I was dx with the bc, but all the tests I had ruled out any problems there so I've been able to relax on that. The thing is, we can worry ourselves sick about the things we don't know yet. At this point, you have enough on your plate w/getting all the treatments started for the bc. Allow yourself to think just about those for now, get your chemo and rads underway and when it's time for herceptin that's a good time to ponder the heart issue. For me, w/my family history of heart, so far both my mugas have been good and I'm just letting go to let the herceptin do it's job and if the time comes when the heart is involved, I'll deal with it then. One day, one step at a time is my best advice. I'll check in later this week to see how you're making out!

[rinaina]

Thank you Sherry for your great advice. I walk around and act upbeat and confident in front of others but I need to be this way for myself as well. I also need to do exactly as you and others have so kindly pointed out and that is to take things one step at a time and not get too far ahead of myself. I appreciate your words of wisdom and know that I am not doing myself any good by worrying. I think I will feel better after I see the oncologist on Thursday and know the game plan. I know I have a lot of good going for me and I need to focus on that and on being positive. This site has truly been a blessing to find because, while I know many who have had bc, no one I know had her2+ bc. Thanks to everyone who has helped me so far.
Rinaina

[callen03]

I have only been taking it for 4 months, but my side affects have been very minor. I am not sure what my decision would be if I were Stage I, but I would probably give it a try. Since I am Stage IV, I have no choice, but I am so thankful that it is available. I have been reading of other Stage IV survivors who have been NED for many years; much longer than the statistics.

[rinaina]

glad to hear you are doing well so far after 4 months of tx. that is terrific. i guess because i am stage1 but her2+ and grade 3 they treat you the same. perhaps i need to have the fish test to confirm the her2 factor. you mentioned that you have read of other stageIV people who have been NED for many years...what is NED? i appreciate you responding to my post, everyone has been so supportive and i can't thank you and everyone enough for being there for me during this time.

[SherryS]

You know, I remember when I was first diagnosed (May/June '05) and how that felt. You do worry. You can't not worry. You put up the brave front in front of family and friends and you put up a brave front for yourself as well, to help you cope. Letting that worry out though is the best thing you can do -- either here, or w/friends, a support network, your doctors...keeping it in is what does the damage. Admitting to fears and worries helps to overcome them. The early part of diagnosis and treatment is hard, it's all new and there is so much information. Reading is good, it gives you a background, but it can also be a hindrance because some of what you might read doesn't apply. You will worry this to some degree until you have answers, and I hope you'll find that as you are going through the stages of bc and all the treatment options that with each month it becomes a little easier and the worry lessens. It's the toughest path you'll walk but it's wonderful to know how many people there are walking along with you, with support, advice, inspiration, and love.

[callen03]

Hopefully you will be NED (No Evidence of Disease) for many, many years.

Also, my doctor had me do an echocardiogram before I started Herceptin, and I will be doing a follow-up one next week. Good luck on your decision.

Carla

[rinaina]

Thank you Sherry and Callen. I don't know what I would have done if I hadn't found this support forum. It is really helping make a world of difference to know that there are others, (unfortunately) who truly understand. It is also great to hear how well so many are doing. Will report back as soon as I have something to report. Can't wait to see the oncologist. A very good friend of ours is an oncologist as well, (not seeing him), but at least I can consult with someone I know as well and get a second opinion on things. Thanks again for being there for me.
Sincerely,
Rinaina

[MJo]

I just posted today because I was so upset that my Muga has gone down. But that didn't stop me from getting my Hercepting yesterday.

Like you I am stage 1 with no lymph nodes involved. I chose aggressive treatment based on my oncotype score. I was terrified. Terror (fright) is normal. It's lousy, but it's normal.

You might e-mail senior member Jean and ask her about the Topo2 test she took to determine whether her Her2 cancer would respond to adriamycin. Her test came back negative, so she's skipping adriamycin. Of course, you need to discuss it with your oncologist too.

I got really sick from adriamycin and skipped the fourth dose. The oncologist gave me a month break and I healed and felt well. I was amazed and grateful at my body's ability to heal. I completed four taxols and nine herceptins and continued to feel pretty well, with few side effects. That's why I was so surprised at my 11 point Muga score drop. I'm upset about it, but it's possible with an excellent diet (a challenge, since I'm the ice cream queen) and exercise I can raise my score and increase my overall health. I am certainly going to nag my oncologist about my heart health.

I stinks that we have a dangerous cancer and that the treatment involves risks. I wish we could just take a shot of antibiotics to cure it. Everyone's experience of chemo is different. Some women sail through it and you might be one of them. But even if it makes you sick, you heal. Our bodies are amazing.

[mimima]

My pathology stats are very similar to yours - stage 1 IDC, 1.5 cm, ER/PR neg,
Her2/neu 3+++, 2 sentinel nodes taken were negative. I'm 77.
I wanted Herceptin even though effectiveness when taken alone has not been clinically proven (I'm told). I have had no negative effects from the Herceptin. Not even the first time (it was preceeded with Benedryl). It was a relaxing experience. I also started radiation. Just finished the 15th of the series of 31 to 35).

I guess we live in hope that Herceptin will do it for this kind of aggressive cancer. I think I'm too chicken to go the chemo A/C route though I believe the oncologist would favor it.

You will be fine with the Herceptin infusions.

[mimima]

Sherry - great read your observations about keeping up a brave front and pretending you are all right. I am into the third month of "living with a cancer diagnosis" and you really nailed the feelings. I keep boasting that I have never felt so strong and healthy. It's true, but I most be internalizing and suppressing wildly because my face has erupted with red bumps. Anxiety, surely.
I am going to go to my first support group on Monday. Maybe I'll let out some feelings I don't want to face.

[SherryS]

Mimima, you are halfway with the rads...congrats. I found the rads soooo tiring, making that trip every single day. It was emotional as well as physical. With chemo I was once every 3 weeks (had 8 rounds -- 4 AC, 4 taxol) so I was at the hospital one day and could then put cancer out of my mind for a few weeks. With rads? You think about it every single day. You're on the way to the finish line!! Hopefully your skin has held up and you haven't had any difficulties. I had a little burning but it never reached a "Bad" stage; it itched up around my collarbone and the dr. prescribed a corticosteriod cream that did the trick. You said you are too chicken to go the chemo route...I understand that fear. I didn't have difficulties w/it -- just faced it head on. I've said it before on different threads here and other boards, but I made up my mind as soon as I knew what I was dealing with that if I had to, I'd crawl on my hands and knees to each chemo -- I made them all. Worrying about the side effects is often worse than they are--each body is different and responds differently, but it's a choice that only you can make.

As for internalizing feelings, you might well be doing that too. I think we supress a lot of what we don't want to deal with or can't cope with and it shows up in other places, other ways. Support groups are great places to vent and talk and share experiences. There are tears and there is laughter and it's a wonderful opportunity to let yourself "be" yourself on every level. The erupted red bumps could be a reaction to the herceptin though so it's a good idea to ask your onc. about that and perhaps have something prescribed to take that down. It's a long road and a tiresome journey to make, but it sounds like you have good spirit and that's important too. Enjoy your weekend and come back and let us know how you found the support group meeting!

[al from Canada]

Dear Ladies,

I think what's important here is that we don't fall prey to the "placebo effect", that is where you expect a response so much that you actually get one. There are many things you can do to mitagate the HER2 mediated action such as olive oil, omega 3's curcumin, etc. As well, make sure you take at leasdt 100 mg of CoQ10 daily to strengthen your cardio.
As far as HER2++ goes, the recent research shows that this is a blessing in disguise, you survival benefit is higher that HER2(-) due of course to herceptin.
Good luck,
Al

[SherryS]

Thanks Al! This is information I didn't have -- I'm great on olive oil, but need more omega 3s and didn't know about the CoQ10 -- very valuable!! With regard to the HER2, my surgeon said the same thing...he knew the cancer was aggressive, and he hoped for my sake that I was + so that I could have the herceptin which was just approved by OHIP in June '05 -- right around the time of my diagnosis and surgery. I like that you referred to it as "a blessing in disguise". Thanks for being such a great advocate.

[al from Canada]

Sherry,

From a previous post:

Again, Co-Q10 is the ONLY recognized suppliment by the FDA that has a therapuetic effect (this could be 6 months old now) and that effect was improved cardio funtion.

If you are TOPO+, I would push that to 400mg / day, if you have a sudden drop, try 100mg 2xday
Al

[Andi]

I can certainly understand your feelings. When I was diagnosed, I found some of the best help I received was in visiting with women who had taken the treatments that were being recommended for me. I would ask them how they got along with the various treatments. They also shared with me how they felt when their hair fell out. I found that when I reached each new page in my treatment journey I was prepared for what could happen. This is also what I find valuable about this website.

I have been taking herceptin since last September. I had 12 weekly doses with Taxol and now am in the middle of my remaining treatments every 3 weeks to complete the year. I was very fortunate to have tolerated both my dose dense chemo (A/C) and the Taxol very well, but in spite of that, the herceptin is the easiest leg of this journey. My e/f has stayed pretty constant. My biggest things I notice on the herceptin is my nails are quite thin, but a little Sally Hanson nail strengthener helps that. I have some "crusties" in my nose, but not every day. The day or two after my infusion I seem to have a hearty appetite, but that goes away by day 3. When I get up my ankles are a little stiff, but if I remember to stretch them before I get up, they are then ok. Hang in there, take each step one at a time and approach your treatments with as positive an attitude that you can muster.

[al from Canada]

you got the drill,

Congrats.
Al
ps I know this is probably one of the most scary and difficult things you will ever do in your life so I think it important not to trivialize it the least bit. Stress is normal, it always helps to bring an advocate to every meeting when possible.
Al

[SherryS]

I appreciate the information Al. These are things that my oncologist hasn't mentioned. So far my mugas have been good (had 2 -- one pre chemo, one post). I now have something valuable to take back to her. I'm not "worried" about my heart -- I'm focussed on the cancer and doing what I need to do, but having had a strange ecg pre surgery last June and subsequent tests (the gamut and all was "fine"), and heart disease does run in my family, I'm aware that being predisposed to heart disease, I could potentially present w/problems, and we'll deal with that if we need to. Knowing about Co-Q10 and dosages makes me feel better!!