Mother diagnosed with Stage 4 BC

[Manugarg1984]

Hello Everybody,

I am writing this on behalf of my Mother, 52 years old homemaker, who was diagnosed with Breast Cancer exactly a month ago. PET Scans done 2 days later confirmed she was stage 4 with one large lesion (Abt 7 Cm) and multiple small lesions in the Liver. PET scan suggested possible Mets to Bones and suggested MRI to confirm the same but results of the MRI was still inconclusive. Attaching the MRI Report here. She is ER/PR- and HER2+ (3+).

It surely has been a life changing news for us in the family and have been running from pillar to post ever since. Living in Delhi, we are blessed to have close family ties (though we are a nuclear family) and everybody around has been there to encourage my mother and offers a helping hand with Daily chores and household management. However, at the end of the day the enemy inside her is determined to take her down and I am not going to let it win! Having met the best of doctors in this part of the world, I understand that standard of treatment for this stage is a palliative treatment combining Chemotherapy and Targeted Therapy. As she is HER2 positive, Herceptin (Trastuzumab) is to be given for targeted therapy and Perjeta (Pertuzumab) can be combined with that too.

Coming back to my mothers situation, we are determined to give her the best possible treatment. Accompanying costs is not an issue, she has a very modest insurance cover of about Rs. 3,00,000 rest of the funding would be done through our monthly incomes and savings. After complete rounds of testings etc, she finally started on her Chemo on 29th April. The regimen imlemented by our current onco is as follows - 3 Cycles of FEC (5 Fluoroacil + Epirubicin + Cyclophosphamide) + Herceptin every 21 days followed by 3 Cycles of Docetaxel + Herceptin. The doctor has suggested that we begin with giving Herceptin alone and see how she responds and could add Perjeta later on if he feels necessary. The treatment is being done at Delhi State Cancer institute, under guidance of Dr. Rajesh Grover. I have a few questions, I have tried to find answers through the doctors as well as internet research, but yet to have complete clarity -  

1. I am not sure if FEC chemo is appropriate for this treatment. I am aware that in US the standard currently is Taxol + Herceptin + Perjeta. As per my doctor, FEC is as or more effective than Taxol but Taxol has been propagated more because it is expensive and benefits the Pharmas. Would love to hear some learned opinions on the same

2. Is it appropriate to begin with Herceptin Alone and add Perjeta later, or maybe when the Herceptin resistance develops?

3. Doctors are not looking at establishing mets to bones so aggressively. I do understand that the treatment will remain more or less same even if there is mets to bones, barring role of radiation if pain increases, but do feel we should have complete clarity on the extent of spread Further the MRI results are also non conclusive. How important is this information and what is the best way to confirm bone Mets?

4. Timings of PET Scans - As per my view we should get a PET scan after this first round of chemo so we can see if the treatment is effective. But I am not sure if one cycle is expected to yield noticeable results?? My concern is that if this combination of chemo and medicine is not so effective then we should take corrective action in quick time. What is the ideal timing for PET scan initially and thereafter? My doctor plans to schedule one after 3 cycles, but I wonder what if its too late? PET scans in Delhi can be done for as low as Rs. 9000, so its a fraction of the treatment cost. Will it useful to get one done every 45 days or so? We are also getting her some alternative treatments based on ayurveda and homeopathy. It would be important to track their efficacy as well

5. Vitamin C infusion - Is it effective? Has anybody on this forum used it for stage 4 and seen positive/no result?? 

6. Any opinions on Delhi State Cancer institute and doctor thereby?

I just realised how long this post has already been So I will cut it short here and thank you all for going through it. All opinions/suggestions are most welcome. Wish everybody battling this terrible disease the very best.

Strength and Love to you and your family.

Her Loving Son,

Manu

[Deval]

Manu your medical concerns will be answered by doctor panel, one thing I am sure  is your mom already is a winner because she has son like you😊.Wish you all the best.

[Manugarg1984 in reply to Deval]

Thank you so much Deval. Wish you the very best too. 

[Joedev]

Dear Manu,

Sorry to hear your mothers illness. But do not worry and be positive and have confidence that all will be well. 

My wife  was diagnosed with Breast cancer last Sep 2015, with very similar state as you have described of your mum. 

Her treatment consisted of  Doxcitacel, Herceptin and Perjeta , 6 cycles at 3 weeks interval.  I believe this is the Gold Standard of treatment even in the US at present. 

After this course her PET CT scan showed complete metabolic response to therapy compared to previous PET CT with interval resolution of lesions in both  breast and liver. For us it is a Miracle and we hope that it stays that way. She is now only on herceptin and perjeta at 4 weeks interval for another six cycles after which again PET scans will be done again.

I was advised that starting Perjeta from the beginning is preferred that staring later as there is supposed to be better response.

Of course it is very expensive drug, but the good news is it is available in India now and also under the Roche - Blue Tree Program the third vial is free after purchase of the first two. Further after 14 cycles it is free as long as doctors prescribe for it.

Please await the  Doctors  response in the forum, they  will give you their knowledgeable and expert opinion. 

I am just sharing my experience so  that it could be an inspiration for you . 

All the best

[Manugarg1984 in reply to Joedev]

Thanks a lot Joedev for your inspirational response. It was really helpful. Could you tell me where you got the treatment done for your wife?  In Delhi the only a select private hospitals are giving perjeta as of now. Wish the very best for your wife and family. My prayers are with you. God Bless. 

[nrneekhil in reply to Joedev]

MY mom also brest cancer patient ,her operation has done 16feb 2016 after that chemotherapy is going on. three chemotherapy has done. He ER, PR , He2neu all are postive (3+). Dr tell me her stage is on llA ,grade ll and score 6.

They give 8 cycle of chemotherapy 4AC and 4TH after that herceptin and TMX but they will herceptin after 4AC completed . U know herceptin is very costly but tell me something awhere i bought herceptin at a low cost ????

Thanks

[Manugarg1984]

I totally agree with you that this is the gold standard as far as US is concerned. I am surprised my doctor has switched to FEC instead of Docetaxol. Dr. Rajesh Grover is India renowned Onco, Padma Shree awardee. Clearly I couldnt argue much with him and mother also insists on treatment under him.  Somebody suggested that he migh have given FEC Chemo because it is aggressive for the Liver and my mother has large liver mets. Also I have read at many places that docetaxol often leads in Brain Mets. This is only for your info and maybe you can discuss with your doctor as to how to keep a check on brain mets. 

[Joedev]

We are based in Bangalore and treatment is at Narayana Hrudayalaya - Mazumdar Shaw Cancer center here.

[sumeet_shah Administrator]

1. FEC has been the standard chemo for quite a few decades and most Oncologists will always start with FEC, unless there are cardiac issues precluding the use of Epirubicin. Even guidelines mention it as the first line chemotherapy. It is time tested and trusted.

2. Your Medical Oncologist can guide better. I do not give chemotherapy or hormonal treatment, but to the best of my knowledge, this is an individualized decision. SOme start with both, while some with Herceptin alone.

3. Bone scan will detect bone mets (or PET scan, if you have done that already).

4. PET should be done after at least three cycles of chemo, to show some effect.

5. Vitamin C infusion: I don't know.

[roxboxfox RadiationOncologist]

It's important to use chemotherapy agents very cautiously in the metastatic setting.

The intention of treatment is Palliative and on an average in the US, the expenditure on someone with mets breast cancer is around half million dollars.

I would offer 

Docetaxel + Herceptin + Perjeta ( That is the only license) currently Perjeta has as of 2016.

Having or not having bone Mets does not change management currently.

If u start of PET scans....u will on an average need 13-15 PET scans...

If cost is an issue, CT scan with contrast can equally give same information.

The info is simply is Patient responding or not...u don't want info on the smallest 2mm or 5 mm lesion in her body. This cancer is essentially incurable bit controllable for quite a few years.

No role of Vit C infusions.

Scan should be done after 3 cycles...PET scan or CT scan it's the pocket of the patient which decides it.

I would reserve anthracyclines (FEC) as a later line of treatment when she has a relapse on 2017 or 2018. There are loads of options..and on an average 5-6 different lines of chemo to keep her going.

Best of luck

Dr Rohit MALDE

[jack_i08]

I would have still preferred starting with just Tratuzumab (Herceptin) and Docetaxel once in 3 weeks. She should be monitored closely for any deterioration of her condition. Herceptin is known to cause cardiotoxicity. Try for some outside setting for the chemotherapy since it will be lot cheaper as compared to corporate hospital. Perjeta costs Rs. 2.5 lakhs per 3 weeks, Herceptin around 58000 and docetaxel at 10500 per 80 mg.

If the mets could be controlled, i would prefer for a mastectomy, but that is a still a long way to go. FEC leads to lots of severe side effects including neutropenia, alopecia, nausea etc and would reserve them for a later stage. If costs permit would use Perjeta only if Herceptin fails to work.

All the best,

Dr. Jack Matthews,

MS, Mch (surgical oncology)