Chemotherapy for Stage IV
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thank you so much for connecting me to that thread, it helped a lot!!
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thank you so much for the link
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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,
Manu0 -
Manu welcome to the forum and sorry to see you here due to your mom's being affected by this disease. I'm not really qualified to answer all your questions except to say that getting a PET scan after only one cycle is probably not going to yield much new information and waiting for three cycles is probably the best.
As for the rest of your questions I'm sure some of the other ladies with more knowledge will come in and help you more.
This is a great supportive group and you are welcome anytime.
Aurora
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Manu, I had a breast MRI after my first three infusions of chemo. It didn't show much effect but my physical exam was much improved. I believe it takes some time for the chemo to show diagnostic improvement. Also PET Scans are so expensive (and I don't know the radiation effect, if any). There may be another type of scan farther into treatment that your team may recommend
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Thanks Aurora, Thanks Jen...really appreciate your inputs. It really is a great forum, with abundant information and experience. Wish you the very best. God Bless.
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Hi WorriorG,
Hope your knee is better, if not see someone. ( My son has a chronically injured knee and it really does affect quality of life. Get it looked at.
Onco docs take care of onco stuff.
Ortho docs ortho stuff. Acupuncture and yoga can help as can pt to strengthen your muscles and ligaments and tendons around the knee.
Anyone can fall, all ages do, especially folks with chemo which can unbalance you in many ways.
( I was on a hospital Falls Prevention Committee for a couple of years) ...
Maintaining and improving hour balance is really important. Try senior center type chair yoga if knee is still a problem and be kind to yourself. Often these classes are reduced cost or free.
( Hurt my knee doing tai chi..and also hiking with my adult children and twisted my knee shoeing off)....over the yearshad pt, chiro, chair yoga, acupuncture, etc. fine with chair yoga) .....start slow, and warm up.
Do bed exercises in the meantime before you rise, when you go to bed..
Regards,
Newbie20111
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Hello, everyone. This is my first foray into these discussion boards. I think my former treatment will be posted with my signature, so I won't go through it. Just wondering if anyone has experience with Haliven. I am trying to decide whether to try it. I've been through several chemo regimens, trying to weigh benefits/toxicity with life realities. I do not know anyone who has been on it, so I'd love to hear from you.
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Hi Marybe,
You are an inspiration! I am 62, newly diagnosed stage IV IDC mets in spine and pelvis. Er+/HR2- now on first round oral Chemo-Ibrance and Hormone therapy, Letrozole. I am glad there is hope for me. When I hear 12 and 17 years living with our condition...it gives me a lot of hope!
Thank you!
Silva
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Hi Truvy.....there is a discussion board under this same forum called Halaven - Day 1. There are several on that board that can answer your questions. I was on Halaven but did not have good results (progression).
Julie
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Hi there, i was wondering if any of you could help me. My friend is asking if anyone of you taking robiciclib chemo tablet? My friend is taking it and wanted to get some feedback in regards to symptoms? Please let me know
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redninrah, you can Search for topics, but it's spelled "ribociclib" - it's hard not to type these names in wrong!!
Hope your friend gets some answers!!
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Hi all,
Here i would like discuss my mom case, she is detected with breast cancer (3cm) mets to lungs(1cm) & lymph nodes[there were small nodules initially]. Our Onco started with 3 cycles of Chemo [ Alrubicin 160mg, Endoxan 900mg, 5Fu 900mg], after this they did PET scan to check the tumor size, unfortunately it has grown in breast as well as in lungs. Then they decided to give paclitaxel-160mg for 12 weeks (weekly instead of 21 days gap), my mom's platelets count came down after taking taxel chemo for 2 consecutive weeks. Than our Med Onco suggested to go for 21 days gap with Invotaxel-160mg chemo 2 cycles. Again we did CT scan to check the tumor size, we were devastated by seeing the report, tumor is still in progress. Some necrosis were noted in breast & lymph, but more has grown in lungs.
Now we have done with lung biopsy to check ER/PR of lung tumor, waiting for this report.
Request you all to check for chemo medicine my mom has taken so far. Are we in right direction or not? Any suggestions on this would be very helpful for us.
Hoping for good every day!
Bhavana
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Bhavana,
I am sorry about your mom and i hope the treating doctor soon find the right combination. I believe the should have biopsied the lung tumor before they started the chemo treatment not only checking for ER /PR status but also HER2. Because if in fact she is her2+then an additional therapy is required.
Ask her oncologist about it and what is the original pathollogy report of the breast. Cancer is very susceptible to mutation when it spreads to other parts of the body.
Wishing your mom a good health and the right treatment.
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manugarg,
I am sorry about your mom diagnosis. She is double negative with her2 positive status. The best succesful trial was taxol ,e herceptin, perjeta. I am er+ and her2 + . I did this three combination and i got a full response for 2 years. Bones mets are not easy to confirm but they also disappeared as well as my liver mets. Now my bone mets are back but the liver thank God is still in remission. Taxol can be replaced with nevalbine. My forst scan during treatment was after 3 cycles. I did 2 weeks taxol alone and 21 days taxol, herceptin perjeta. I did a total of six months. Then when i became in remission i was put on tamoxifen and herceptin , perjeta every 21 days.
I hope this helped , i wish your mom a food response.
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Hi Sana. Sorry I've not bin in touch. Had a lot on.
They have only offered taxol or niverlabine, or a clinical trial to see if her blood has a mutation but the clinical trail could take weeks before we get blood results back.
They have taken her off the xelado as they said, based on the scan results that it had not done a good enough job.
They are advising her to go for taxol next but would only have a 30% chance of working, and even if it did it would only do so for a few months. Side effects include full hair loss and she would have to go to the hospital all day once a week for 12 weeks. 😨
The other option is the niverabline, which is an oral tablet, and although there is less chance of hair loss, they said they couldn't guarantee that she wouldn't loose her hair, the side effects include more nausea and would be more severe and they don't seem to think this drug would be as effective.
Meanwhile mum seems to be loosing the use of her legs, she has 3 blood clots and she has been bed bound for a week, except from me occasionally getting her to try to walk to the bathroom.
She has until Wednesday to decide what to do.???? 😓
Case of a friend plz discuss
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Hi everyone,
This is my first post. I was dx with stage IV TNBC, back in November. The Pet scan showed cancer in liver and bone. I started Xeloda in December, my follow up scan in Feb. showed huge decrease in c-cell activities. But unfortunately, my second follow up scan in April showed more activity... and now it has spread to my thyroid.
I am off Xeloda as of Monday, and my dr. suggested Halaven.
I wonder if any of you have had the same result with xeloda, and if you did, what was your next treatment.
Thanks,
Mary
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Dear Mary_T,
Welcome to the BCO community. We are sorry for your diagnosis but very glad that you reached out to our members. You are sure to find lots of support and helpful information here from others with stage IV breast cancer. This particular thread has not seen much activity in recent months and we try to steer our new members to topics that are more current so they can get more prompt replies. Perhaps you can post this same question in the topic about Xeloda in the Stage IV forum as that is a pretty active thread. Let us know how we can help you to best navigate your way around here.
The Mods
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me to! Start neck week how are you doing?
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Stage 4, i was diagnosed from the start in 2008. I have these comments to make, and they're my opinions. Since then I have only been on Herceptin and Arimidex as of now.
In another thread, I have cautioned about taking ZOMETA. I started it in 2009, and was still infused with it every 12 weeks, until I stopped in 2019. Early on, I started having oral problems in my mouth, sores started, an ulcer, tori. About 2 years ago, I developed osteo necrosis. My lower left jaw began falling apart slowly. The pain was intense and no dental surgeon would touch me. I wound up seeing an Infectious disease specialist and was on Augmentin for more than a year. Last year I found dental surgery group which also had to prescribe Augmentin. This is because The side of my tongue became very sore by scraping the bones emerging from my gum. It is a long term process, which means, the condition comes and goes. Pulling out the bones is not an option. They have to fall out naturally.
One of you wrote about sugar intake. I used to be a health nut and stayed away from sugar and starch and no desserts. Since my diagnosis in 2008, when I was told I didn't have long to live, I have been eating sweets of all kinds. Candy, ice cream, cookies, cake. I'm still on the same meds that I started in 2008.
As I wrote, this is my experience only. Do not try this at home.
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Hello
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Hello @shikha177! Welcome to Breastcancer.org. If you feel comfortable sharing more about your experience with breast cancer or if you have any questions, please don't hesitate to reach out. We're looking forward to getting to know you!
Sincerely,
The Mods
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