My mother diagnosed with BC on 02/04/16

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, India 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.

In the context of treatment options, I think it is important to shed some light on the medical and insurance system in India. India is considered to be one of the more advanced nations in field of Science & Medicine. Indian doctors are world renowned and the facilities available here nearly at par with the worlds best. But First important difference, area where we lack the most is Research & Development, US being the leader of the same. The latest developments in the field of medicine reach our country with some time lag and further more time is needed for their wider acceptance. Clinical trials are almost non existent, hence the options for treatment are limited to the well established methodologies. Relevant case in point is the use of Pertuzumab for stage 4 treatment. Perjeta was launched in India only in the mid of 2015, and is yet to take off in big way primarily because of its high cost. One dose of the same is priced at about 4,000 USD, which in Indian currency seems to be even more expensive. After purchasing 12 doses, the company make it free of cost, phew!! Herceptin on the other hand costs about 1,000 USD. So having met the best of the doctors in the largest Private hospitals in Delhi, I understand that currently doctors are still not very comfortable pushing perjeta to their patients, mainly because of 2 reasons - High Cost, and lack of evidence on its efficacy in this part of the world given its so recent.
Now moving to the second and very important difference in the medical system here - Lack of Insurance. Unlike highly developed nations, our country does not boast of Govt. sponsored insurance program. Health insurance has to be either purchased from private/government players. For those working with Govt./ Big Corporates/MNCs, medical insurance upto a certain limit is usually provided by the employer. Hence for common man, drugs like Perjeta are completely out of reach and the doctors are also wary of pushing these as the patient would expect sure shot and quick results after spending such amounts. Another dimension to lack of insurance is that private hospitals in this part of the world have turned into big profit making machines and often take patients for a ride with all kinds of absurd diagnosis and treatments. The objective usually is to squeeze the most out of the patient. Government hospitals on the other hand are free of cost (excluding expensive medicines like herceptin but chemos are free) but the conditions are not fit for good patient care as they are thronged by the lowest stratum of the population and very over crowded.

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 5,000 USD, 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. 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 India can be done for as low as 150 USD, 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??


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

manugarg1984

Adding some more info here - cancer is IDC, Grade 2.