Please share your Kadcyla experience

[Nikita1806]

Can anyone on Kadcyla share their experience? Like duration and which stage they were on when they started.

My mom who is stage 4 is starting soon after Herceptin (1 year) Lepatinib (Tykerb) (3 years)

Thank you!

[nambiar12]

After having 14 doses of herceptin ,on taking PETSCAN it was found that some nodules were there in the trachea and hence Dr Dua ,the oncologist of appollo hospital advised kadcyla infusion. The stage was the same as in your case. In fact the course of herceptin had adversely effected the cardiac muscle and caused LAWER LVEF. kadcyla infusion is to be taken like the chemotherapy on every 21st day. The advise is to continue till one can withstand the infusion . Having the 89th dose of infusion this weekend. Though there is no adverse effect on the body like the chemotherapy as the infusion progesses will feel the effect. Defenitely kadcyla is very effective as it was started in 2016. Only problem is the cost of the medicine.But the company is helping the needy by free medicine after some doses. Wish your mother complete recovery.

[Nikita1806 in reply to nambiar12]

Thank you so much for your response. I am really feeling positive about the medicine after reading your experience and response to medicine. I understand it’s patient to patient, however i would like to be optimistic about it. Yes we have reached blue tree and there are some payment methods along with free life time doses.

Appreciate your response. 🙏

[bga1 in reply to Nikita1806]

Hi , Could you please share some info on blue tree and how to reach them ? My mother also suffering from stage 4 MBC and she will be on Ujvira which is expensive.

Thank you

[Nikita1806 in reply to bga1]

We got distributers number of roche kdcyla from our oncologist. As per patient program we have to pay for first 6 dose and rest all will be free for life time. Since my mother is stage 4 , its lifetime till the time it stops working. For stage 1 its around one year. They have some program for them as well. Ujivira is much more cheaper than roche. However they dont have any patient program in place.

[bga1 in reply to Nikita1806]

Thanks for ur response.

[Deepak1965 in reply to nambiar12]

Hello one thing you can do for nodule if not respond to herceptin that is targeted radiation which has less side effects also. we have done that in my wife case and response was good

[nambiar12]

Glad to know that the information was useful. BE POSITIVE always

[sumeet_shah Administrator in reply to nambiar12]

nambiar12 , thank you for your replies here. Not only has it helped the members above who requested for the info, it has also given some insight to me as well. It’s good to know that 89th infusion is on, and all is going fine. It will remain fine, don’t worry. We are all with you.

[nambiar12 in reply to sumeet_shah]

Thanks for the message. In fact sent the message with the hope that it will be helpful for those who are apprehensive of the kadcyla infusion.

[bga1]

Hi , Did Kadcyla infusion started for your mother and what is the dosage ? And how your mother doing now ?

[Nikita1806 in reply to bga1]

Hi there. Yes she had her first dose three weeks back and today she is having the second. Her dosage is 230mg. She had some acidity and gas issues. Because of which severe headache. So this time we will be careful with the food she is taking. Otherwise no severe symptoms. Little nose bleed and hair loss.

[bga1 in reply to Nikita1806]

Okay .. may i know how much they are charging for 230mg ? For 160 mg hospital quoted 2.49L for me.

[Nikita1806 in reply to bga1]

Because of her weight we need to buy both 100 and 160. 100mg is costing us one lakh 72 thousand and 160 is costing us 2 lakh 75 thousand. But this is from the apollo hospital. For the next infusion we will get it from a distributer. Which will cost us total around 3 lakhs 60 thousand.

[bga1 in reply to Nikita1806]

Oh okay thank you

[rajasivaji]

My mom is stage 4 MBC Her2+ve , spread to lungs. she was in chemo and Herceptin for a year, then lapatinib for 1.5 years. most of the disease was in control, however few nodules in lung is not responding. So added Kadcyla, she is currently taking her 21st cycle. For her, kadcyla alone not helping. so she is taking lapatinib along with kadcyla. Initially, she was having more side effects like severe back pain in spine area and headache, now she is ok. Now we are adding weekly pacitaxel for keeping it control. First six dose costed 15 Lakh INR, after that free for life from Roche, blue tree. may be start during the one or two months before the insurance cycle ends, so it may cover maximum of the six dose cost. Keep our hope and keep trying. New medicine may come, so we have push till that point. Hope it helps.

[Nikita1806 in reply to rajasivaji]

Hi there. Thank you for your reply. Yes with kadcyla we had more side effects than herceptin. For us herceptin didnt work much. Lepatinib worked for a while though. Hoping kadcyla works for her. She had lesions both in lungs and brain. For brain we did srs radio surgery. For lungs doctors suggested kadcyla. We have approached blue tree for the same and they mentioned 6 cyscles plus life time free policy which we are taking. Did u take the medicine from hospital or distributer? May i know the hospital you are referring?

[rajasivaji in reply to Nikita1806]

For medicine, we are also using Blue tree, contact received from the hospital pharmacy. My mom is taking treatment from VS hospital, Chennai. After the paid medicine, you can get the free medicine delivered to your home also, its not hospital specific scheme, only you need to show you have infused the previous medicine by date, doctor sign and hospital seal and they periodically check over video call on patients condition.

[Deepak1965 in reply to rajasivaji]

as you says nodules in lungs not responding than try proton therapy at tata mumbai will get you much help. and less side effects

[Nikita1806]

I have heard enhertu is the next line of treatment. But sadly its not available in india yet. I really hope we are able to push till the next line of treatment is available.

[rajasivaji in reply to Nikita1806]

I am nowhere qualified to comment on next line treatement, but emotionally connected to read whatever available online indepth. My mom also not responded very well with Herceptin based treatment, and TDM1 and Enhertu, all are same trastuzumab based. It worked very well in controlling breast, not that great in lung. As lapatinib(kinase inhibitor) worked for my mom well, so I am really hoping medicines like Neratinib, Tucatinib available soon in India.

[Nikita1806 in reply to rajasivaji]

May i know what all medicines she is taking right now? Because we just stopped lapatinib and started kadcyla. She was and will be taking letrozole along with it as she is slightly er positive. Also is she NED right now? How are her lung nodules? Sorry about too many questions. However i hope its all the positives tht keeps us going.

[rajasivaji in reply to Nikita1806]

No problem and it feels nice that our experience may help someone in keep themselves informed. Yes, positivity and hope only keeps us moving. On treatment, We also stopped lapatinib for a while and continued only with Kadcyla, however her lung nodules started progressing. So we added reduced dose of lapatinib with TDM1. Now again, the disease is progressing, so added little dose of nab.paclitaxel. Even doctor is surprised, TDM1 not worked as effectively for my mom as it did with other patients. So, there is high probability it will work for you.

[Nikita1806 in reply to rajasivaji]

Thank you for all the information. Appreciate it. Wishing your mother a very good health. 🙏

[Nikita1806 in reply to rajasivaji]

hi rajasivaji . Hope your mother is doing well.

My mother had a progression on kadcyla and we are thinking about next line of treatment which is very confusing.

Do you mind sharing if lapatnib and kadcyla worked for your mom?

[Deepak1965 in reply to rajasivaji]

Hi Rajasivaji have you tried proton therapy for her? its effective now. Even if its done targeted radiation also more effective and it stopped progression

[Deepak1965 in reply to Nikita1806]

enhertu is available in india with distributor in delhi csts you 3 lakh per dose even you can get it from patient assistance programme enhertu4u.com/content/dam/p...