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Scared of starting Herceptin

13 REPLIES 13
Member

Re: Scared of starting Herceptin

I’ve just finished all 18 of my Herceptin and my heart function didn’t change. I’m nearly 52. Don’t panic it’s doable. Wishing you well. It’s all a balance if they are worried about your heart they can prescribe things. It will be ok xx
Member

Re: Scared of starting Herceptin

I had 18 cycles herceptn in 2011 and am  on Heception (for 2 years in every 3 weeks) 

 did and am doing so far very well with Herceptin. Neither side effect nor reaction. 

ps.  (1) I am still not quite outstanding the first time I had muga scan regularly. Ths time no follow up muga scan  though my onco said so before starting treatment.

       (2) had heart scan before my second time treatment,... strong heart

       (3) just to share, in 2011 had heart scan before kicking out cycle 2 and on the morning in the chemo unit for my 2nd cycle, the IV needle was already in, the nurse suddenly received call from my onco saying that ths cycle had to be postponded. Later, my oncol told me my heart function dropped to 46% after cycle 1 (48%,if rememer correctly, is the minimal acceptable % to continue . I was still young (43 years old) . He didn't want to fix me afterwards. He did change one of the chemo drug (not herceptin) but forgot what is it.......Mel Mel

Member

Re: Scared of starting Herceptin

Another tip for the blood count is Manuka honey. My bloods were very borderline after first chemo but I then had a tsp of Manuka morning and night after that and my bloods were ok. There is slot of evidence that it can support your immune system and it certainly seems to have worked for me. Again wishing you well with treatment, I’m so grateful for the access to Herceptin and I’m hoping to get back to normal when I’m done in February but still glad to have been able to have it. I can remember all of the campaigns to make it available on the NHS
Community Champion

Re: Scared of starting Herceptin

Yes I just took those, they did not prescribe anything for my heart. I took them because I was worried they would stop my Herceptin because they did stop my chemo! I had 4 instead of 6 because my blood counts went too low to continue so they brought the radiation forward and I continued with the Herceptin.

Bay
Member

Re: Scared of starting Herceptin

Hi there
I have got my appointment through for the cardiologist in the first week of Jan so hopefully I will get a bit more info about the state of my heart 💓
Chaffinch17 - I’m 53 and ironically felt as fit as a fiddle when I was diagnosed- totally different story now! The 4 x EC chemo has knocked me for 6 - neutropenia, cellulitis, wrecked my veins (due to get portacath fitted in January as cannulas are now an ordeal and both arms are painful) ..and now damaged my heart. Always willing to try chocolate as a cure though 😉
Blue ash - many thanks for that info re supplements- did you take them on their own? Not sure if those + Ramipril would be ok but I will ask the cardiologist when I see him.
I feel like I’m stuck between choosing to die from the cancer or dying from heart failure due to the cancer treatment - sorry if that sounds dramatic 😳.
As I’m Her2+ with lymph involvement and a large tumour that wasn’t visible on mammogram or ultrasound it feels like it’s just been one disaster after another since diagnosis.

Thanks again for your replies- they’re much appreciated 💖
Member

Re: Scared of starting Herceptin

Hi Bay, I hope you find a way to have the herceptin. I had number 15 last week my echo results started at 59 and have stayed around that level all through my blood pressure was high normal and is now normal. I read somewhere that very high cocoa chocolate is good for BP and heart function and both have improved since I have been eating some 85-100% chocolate daily only a square or so.
There are side effects but it is a great drug and us HER2 ladies are lucky to have it. It’s quite likely that you may only need 6 months there is a body of opinion and some positive trials that suggest that this duration is just as effective as the 12 months. Wishing you luck with your treatment.
You don’t say how old you are and how fit. Keeping as active as you can definitely helps with side effects of chemotherapy and herceptin x
Community Champion

Re: Scared of starting Herceptin

Hello, don't worry because you can take supplements for your heart.

 

I have cut and pasted this because someone was asking before:

 

The supplements you want are pycnogenol and CoQ 10.

http://www.doctorshealthpress.com/heart-health-articles/the-heart-strengthening-tag-team

 

The combined one they mention is hard to get but you can get them separately from Amazon. I get the Ubiquinol 100mg ebcause that is supposed to be absorbed better.

 

My first echo scan was 55% and my second was 60% I took the supplements a week after the first one because they said if mine dropped to 50% they would not give me Herceptin. They already stopped my chemo because my blood counts got too low!

 

I am taking these:

https://www.amazon.co.uk/gp/product/B00QJ4F0KG/ref=oh_aui_detailpage_o03_s00?ie=UTF8&psc=1

 

https://www.amazon.co.uk/gp/product/B00CLSFE3W/ref=oh_aui_detailpage_o05_s00?ie=UTF8&psc=1

 

Bay
Member

Re: Scared of starting Herceptin

Hi
Thanks for your feedback ladies - much appreciated 😊
However, I decided to delay my Herceptin and Pertuzamab- I just wasn’t happy starting that treatment with such a low baseline. Had my 1st Docetaxel yesterday. Will hopefully be seeing a cardiologist in Jan and getting an echocardiogram done before my next cycle to see if the Ramipril has done anything and decide what to do next.

Kathyx- my previous tests have been MUGA scans which give the percentage on the results. Not sure how echos work - will find out next month!
Member

Re: Scared of starting Herceptin

I've had 2 echo cardiograms in the last 6 months and I'm about to book my 3rd. I know there weren't any problems but I don't remember seeing any percerntage figure on my results. What's it likely to come under on the report?

Member

Re: Scared of starting Herceptin

 

Hello bay

I have been taking Ramipril since the beginning of Herceptin as I was 'borderline' .I have been at 50% since I started but it hasn't gone down at all. I have just had number 12 and my heart is still going strong although I am 75 !  Try not to worry. Your Oncologist has your best interests at heart and you will be having regular echocardiograms.

Community Champion

Re: Scared of starting Herceptin

Hi Bay, I'm sorry you're feeling so scared and I hope I can reassure you that all will be OK.  I went through 3 lots of EC, followed by 4 lots of Herceptin, Pertuzamab and Docetaxol throughout 2017.  My initial heart scan showed a healthy heart for a 49 year old.  Unfortunately after several lots of treatment my heart started to react and at it's lowest reading of 54% I was put on Ramipril.   

 

I had chemo first, followed by a mx and radiotherapy followed by a continued 12 months of Herceptin injections.  I was delighted after surgery to discover all the cancer in my breast and lymph node had gone - absolutely no signs of it left at all.  This, I believe, was mainly due to the targetted therapy ie Herceptin and Pertzumab. 

 

So here I am today almost coming up to 2 years since initial diagnosis - leading a new "normal" life.  I do still have to take 5mg of Ramipril a day as well as Thyroxine every day as my thyroid system was affected by treatment - but I'm here, I'm alive and everyday I thank the medics and research teams who discovered these amazing drugs and have enabled me to continue being here.

 

The oncologist's know what they're doing - please put your faith in them.  You must also tell them of any problems/side effects you are having following each treatment - they can help you.  I will add, for me personally the Docetaxol chemo was harder than the EC and if at any time you wish to ask me a question or require some reassurance please contact me.  If you go to the May 2017 Chemo Starter group in this forum you will find some fantastic tips on coping with the side effects.  

 

Good luck my lovely and hope I have helped in some small way of reassuring you and hope all goes well for Wednesday - I will warn you, it will be a long day at the hospital - they keep you under survelliance for some time following your first lots of treatment under this new regime.  x

Bay
Member

Re: Scared of starting Herceptin

Kathyx - thanks for the link. Unfortunately it states that 50% is considered ‘reduced’ not normal😢
Member

Re: Scared of starting Herceptin

Anything over 50% is considered to be normal, I believe.

 

"The left ventricle is the heart's main pumping chamber that pumps oxygenated blood through the ascending (upward) aorta to the rest of the body, so ejection fraction is usually measured only in the left ventricle (LV). An LV ejection fractionof 55 percent or higher is considered normal."

 

https://www.mayoclinic.org/ejection-fraction/expert-answers/faq-20058286

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Bay
Member

Scared of starting Herceptin

Hi there
I’m due to get my first cycle of Herceptin, Pertuzamab and Docetaxel next week and I’m scared stiff😢
Had my Muga results a couple of days ago and found out the 4 rounds of EC I’ve had have resulted in a drop in my readings - I’m now down to 50%. This is before I’ve even started !! I’ve been put on Ramipril but my onc hasn’t delayed this cycle as he’s already given me an extra week for the change in chemo regime. I will have been on the medication for less than a week when I have my chemo/Herceptin so it obviously isn’t going to have made much difference that quickly.
Has anybody else started with such a low reading? As usual I’m wide awake in the early hours worrying...convinced I’m going to have heart failure but knowing if I don’t have the treatment my odds of surviving will be slashed.
I would be grateful to hear from anyone who has been in a similar situation - to hopefully put my mind at rest before Wednesday!!
Thanks in advance 💕