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Lisajean 06-12-2009 01:05 AM

Hi, I am new
 
Hi,
I was diagnosed with breast cancer on March 6, 2009. Her2+, PR+, ER+. I have three tumors in my right breast (1.1 cm is the largest, two smaller ones) and one lymph node that tested positive.

I am doing neo-adjuvant treatment now - have completed four rounds of chemo (of a planned six total) using taxotere and carboplatin along with weekly Herceptin treatments.

I had a Herceptin treatment today and have had chest pain since. I have had this before as well. But, my onc claims that it is not a problem and is not related to the herceptin. He ays that heart problems that are caused by herceptin do not include pain. I don't get this at all. The literature on Herceptin says to alert your doctor immediately if you have chest pains. So, I did, and he thinks it is nothing to worry about.

I am planning on just going to see a cardiologist soon. But, I was wondering if anyone had experiened chest pain with hercetpin treatments. Also, anyone else out there who is doing or has done neo-adjuvant

I am SO glad to that this group exists. There are very few women that I come across that have her2+ cancer, so it is so great to find this support group.

Thank you in advance!

lisajean

Pam P 06-12-2009 04:44 AM

Lisajean -
I'm glad you found this group. There are lots of amazing people here.
I don't know about the chest pain you describe. I've been on herceptin a lot, but haven't had that side effect. Maybe others will post with info on that experience.
I think you are always right to get 2nd opinions when you need to. Even if it's to confirm that it's nothing different from your 1st doctor's assessment, it will put your heart and mind more at ease.

Savta 06-12-2009 05:16 AM

Hi, Lisajean,

I think we are the only club that is sad to greet "new members".
I had neo-adjuvent chemo--4 A\C, and 12 Taxol and Herceptin.
By the time I did the surgery, there was no evidence of cancer, either in the breast tissue or lymph nodes that were taken out. I am definitely a believer!!! I continued Herceptin every three weeks for a year--but was monitored with echo-cardiagrams every three months. I never had chest pains, but I believe the echo-cardiagrams were to watch what's going on.
I think you're right to get an opinion from a cardiologist if for no other reason than to put your mind at ease--and not be sorry to overlook something else.
Wishing you sucess with your treatment, and good health!

Mary Anne in TX 06-12-2009 06:09 AM

the evaluation of your heart as you take herceptin is important.
They can then compare the flow from the left side as you go along.
If I remember correctly, I had chest tightness with carboplatin and some tightness of breathing. Gee'z I think that's the one.
But you don't ignore anything!
Best wishes for a smooth ride!
Stand up for yourself! to get the best treatment, sometimes we need to not only be informed, but persistent!
ma

jml 06-12-2009 06:32 AM

Welcome, but sorry we all had to meet this way.
Prior to starting treatment, did you have a baseline Echo or MUGA performed?
If not, your Onc can write the order for those tests even before you go and see the cardiologist - and you'll have the results to share with the cardiologist when you do get to see him/her.

I'd been on Herceptin for 7 years & never experienced chest pain or decrease in cardiac function/output - Thank God!

Wishing you all the best. Know that you can come here for comfort, advice, guidance or even a swift kick in the pants if that's what you need! We're all in this together & the friends I've met here have been my lifeline.

Keep the Faith~

Jessica

Dx - 5/17/2002 @33yo;
Stage IV-IDC+liver met;Lumpectomy,12/12+ nodes; er/pr-, Her2+++
Tx1 -Navelbine+Herceptin x8 wks;No response, progression - single liver met to "innumerable/immeasureable"
Tx2 -ISIS 2504 clinical trial x 6mos;Taxol+ISIS (continuous IV);partial response.
Tx3 - Taxol+Herceptin x 13 weeks;NED :)
NED 9/11/03-9/17/04,
9/04-Recurrence 1-single liver met-
Taxol+Herceptin x 4 weeks prior to RFA, but NED again, cxl RFA.
12/04 -Recurrence 2 - single liver met
1/05 - RFA - partial response
2/05 - Abraxane+Herceptin x 9 weeks;No response due to improper dosing(?)
3/05 - Taxol/Carbo/Herceptin to NED again.
11/05 - Recurrence 3 - same single liver met
12/05 - Right hepatectomy-55% liver removed. Success. NED in liver ever since.
2/06 - Recurrence 4-single lesion in L breast again
3/06 -excisional biopsy. 1cm IDC, extensive high grade DCIS.
No tx due to liver still healing post hepatectomy, follow with Herceptin & scans to keep an eye on DCIS
12/06- L mastectomy w/ reconstruction 3/07 & 8/07
10/07 - Recurrence 5 - Supraclav nodes
Tx4 -Gemzar+Herceptin, til NED 3/08.
9/08 -Recurrence 6 -Supraclav nodes again.Rads1 - x 7wks
10/08 - Acute Renal Failure - ICU x4 days, hospital 1 week,
stents in ureters/kidneys x 4mos.still no known cause???
10/08 - Recurrence 7 -Sternal nodes; supraclav -NED:)
Tx5 - repeat Gemzar+Herceptin; NED in 1/09; finish GH cycle to 3/09.
4/09 - Recurrence 8-Sternal nodes...progression while on GH cycle.
6/09 - Tykerb/Xeloda - Yowze! very expensive out of pocket costs!!!

DanaRT 06-12-2009 06:58 AM

Dear Lisajean, I experienced periodic chest pain during the 36 weeks of TCH at various times usually evenings. It was very uncomfortable and would frighten me. I would take a Protonix and tell myself if I felt better in 45 minutes then it had to be heartburn. Thankfully, it was heartburn. My onco gave me samples of Protonix and it worked beautifully.
I have periodic MUGA scans to make sure my heart wasn't affected by the Herceptin. I have never heard that one wouldn't experience chest pains if the Herceptin is having adverse effects.

Keep us updated on your progress and keep pushing forward.

Love,
Dana

Believe51 06-12-2009 08:47 AM

Hello and welcome Lisajean, I am sure like all of us that your plans for life did not include ever having to be in such a place. I am so thankful of this site and the family we have created here and extend a welcoming greeting. This is such a wonderful place to find support, knowlegde, understanding, but most of all love.

You will find hope and inspiration here that shall guide you through your journey. These members here have seen and heard it all. Please feel free to express anything that you need to. Again, welcome and I am looking forward to getting to know you.

You will never be alone, we will all walk besides you.>>Believe51

suzan w 06-12-2009 11:24 AM

Hello Lisajean, sorry you had to find us but it will be the best step you could have taken! We are AWESOME!!!Ditto to the
MUGA scan which measures the blood's comings and goings in your heart. Critical to have a baseline and to have it repeated throughout your herceptin treatments. Keep in touch and ask lots of questions!!! xox Suzan

juanita 06-12-2009 01:59 PM

sorry you had to be here but since you are you found a really great place to be. ask anything about anything someone will always have a solution to your problem!

MJo 06-12-2009 05:10 PM

I remember having chest tightness on herceptin, as well as cramps in my ribs. My doctor didn't seem worried, either. But I think you are right to be vigilant. I had an echocardiogram, but not until treatment was over. All was well, I'm glad to say.

Shobha 06-12-2009 05:59 PM

Dear Lisajean,

Welcome to our wonderful family! I remember having chest pains with Taxol+herceptin. The heart was fine but the problem was stomach acidity. I was given omiprezol which helped although it took almost 3 weeks for the effects of omiprezol to kick in.

hugs,
shobha

Laurel 06-12-2009 06:27 PM

Hi Lisajean!

Welcome to our merry band of pranksters! Sorry you are joining, but now that you are here stay and have some fun with us!

When I was doing my chemo, ACTH dose dense, I would have chest tightness and shortness of breath. As time went on the shortness of breath became worse. This was due to my anemia, and of course those are very strong drugs that your body is being subjected to. After completion of the AC and T with Herceptin alone, my counts have climbed, not back to normal, but less anemic and my stamina is quite good. I am jogging again! My heart is monitored every 2 months as my fraction dropped to 55, but has held.

I do recall that I developed severe esphagitis and took Protonix until I learned that Probiotic supplements worked better.

I have 2 more treatments of Herceptin and I am finished! You'll get there too! Hang in there!

Cannon 06-12-2009 07:43 PM

Lisajean,

Welcome to the club no one wants to join. I'm so glad you found us -- this is the happening place for her2+. The people here have so much information and inspiration!

I had a similar presentation as you - multifocal, with largest 5 cm, and three positive nodes. You'll see my treatment below. I am glad to say, it's almost three years since my diagnosis. We have MANY long time survivors here, they are amazing.

No thoughts on the chest pain, except to agree about a 2nd opinion, any time you are not comfortable with the one you've got. I must say, my oncologist often told me that he was not worried about various things -- when I was -- and I trust him enough to be my guide.

It's a tough fight, and feeling bad is (often) part of the process -- you will get through it!

Rebecca

Sheila 06-12-2009 07:51 PM

LisaJean
Welcome to our group...i can only echo what others have said about getting the baseline MUGA or Echo....it is probably nothing, but better to have it checked....you will find a wealth of information, encouragement and genuine care and concern here....you have come to the best website to help with this disease!!!

Jean 06-14-2009 11:09 AM

Hi LisaJean,
Welcome...I just wanted to add my good wishes for the treatment to go smoothly for you. Before you know it you will be done with the difficult portion of TC..the herceptin treatment is much easier.

If your team did not order a muga scan prior to treatment, ask why not? and then ask to have one.

Best Wishes,
Jean

Lisajean 06-14-2009 06:34 PM

Hello and Thank You!
 
Thank you so much to all of you for your replies. I am so grateful to have found this group!

I did have a baseline echocardiogram. The first I have heard of the mugga test was here. Should I have this done? My onc is not very responsive - in my opinion and seems completely unconcerned about my complaints. I just had a meeting with him this week and he did not even know how many chemo rounds I had at this point. I have had four, he thought I had only had two - even argued with me about it saying "No, you're thinking of the Herceptin treatments" and started to explain to me what the chemo days are like. It was pretty discouraging to realize he had not even reviewed my case before our meeting.

Anyway, I have kind of given up on him as being invested in my care. So, my plan is to work through my primary care doctor and get a referral to a cardiologist and go from there.

Thank you so much for all of your encouragement and support. I am so grateful to have you found all of you!

Believe51 06-14-2009 07:13 PM

Lisajean, good for you for making a move and taking control of your journey. My next post would have started by mentioning the crazy doctor but you were already there. Reading that made me smile for you, you deserve so much better for an oncologist, after all you will be a team. I will be following your journey and routing you on. So far you are off to slamming start to a cancer-conquering journey. You go girl!! Good luck in finding the perfect team player, believe me, you will know when it is the one.>>Believe51

Savta 06-15-2009 12:25 AM

I whole heartedly agree with Believe 51. When I received my diagnosis, the first decision I made was that I would not go to any oncologist who wasn't going to fight for me. My sister in law succumbed to breast cancer over twenty years ago, but I remember her referring to her oncologist as Dr. Doom--because he always depressed her. I am fortunate to have an oncologist who doesn't sugar coat the facts and at the same time gives me hope. You have to tip the scales in your favor and have a team who has your best interests at heart.
Keep positive and remember that each treatment brings you closer to good health and to life.
All the best!

Colleen007 06-15-2009 06:15 AM

LisaJean,
Good luck...in reading your last post, you not only need a cardiologist, but I'm thinking that if your oncologist didn't even know that you were on your 4th treatment, you might want to find a new oncologist while you are at it. Once you finish treatments, you will continue to go for follow-ups so you should be with someone you are comfortable with and who you trust with your life.

Also, Dana mentioned Protonix and heartburn. I also get serious heartburn from my chemo and it feels like what I imagine a heart attack would feel like. So, keep that in mind too.

Colleen

charlotte 06-15-2009 06:55 AM

Hello and welcome to our group. the folks on this site are very encouraging, and have loads of info. Please let us know how you are doing.
Charlotte


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