Carboplatin?

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Smodge
Smodge Member Posts: 3
edited March 2016 in Triple-Negative Breast Cancer

Hi. 

My sister has just been diagnosed with TNBC grade 3, in the breast and at least 2 axillary lymph nodes. The plan is EC-T  chemotherapy (3 cycles of each at 3 weekly intervals) then mastectomy and radiotherapy. I have been reading about treatment and it seems adding carboplatin improves the rate of pathological clearance and therefore survival. I have asked the oncologist about this and he said there is no evidence for adding a platinum based chemo. In the UK ECT is the standard regime and we have no alternative even if we get a second opinion or go private. Does anyone have any experience in this especially in the UK? Thanks 

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2016

    Hi Smodge-

    We have a study published on our main site with lots of helpful information about carboplatin and it's effectiveness in treating triple neg cancers. You can find it here: http://www.breastcancer.org/research-news/triple-n.... Also, you might be interested in a thread in the Triple Negative Forum, it's for triple neg women in the UK: https://community.breastcancer.org/forum/72/topics.... Plenty of pages to read through, and lots of members to connect with there!

    The Mods

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  • Smodge
    Smodge Member Posts: 3
    edited March 2016

    Thanks for the link. I'll have a look at that and the other forum you mentioned. What is used in the US and other places? Is ECT still effective?

    Sorry to ask so many questions. Very worried and want to make sure my sister gets the best care. Thanks

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited March 2016

    Hello Smodge,

    I wanted to say hello and say that I am sorry to read that your sister has been diagnosed with breast cancer with triple negative receptors. It is good that she has a concerned sister like you to help. I want to reassure you that she will be alright and can get through this. The chemotherapy plan looks identical to the one I had, epirubicin, cyclophosphomide and a taxane. For the taxane I had docetaxel (Taxotere) as opposed to paclitaxel (Taxol). I am now just three months off eleven years since I was diagnosed. This chemotherapy is highly effective. I had treatment every three weeks, starting off with the EC for three months and then three months of Taxotere.

    I had one node affected, the sentinel node.

    Grade 3 is very common for triple negative receptors.

    Do you know what stage your sister was given? This depends on the size of the tumour.

    I had a mastectomy about three weeks after chemotherapy and was pronounced NED (no evidence of disease).

    The platins are relatively recent as an addition. They do of course have side effects like all chemotherapy drugs.

    I shall do a bit of research for you today.

    You are welcome to come to join our thread if you wish. I started it in September 2010 to try to bring triple negative out of the dark ages in the UK.

    What kind of breast cancer does your sister have? The most common is IDC (invasive ductal carcinoma).

    Sending you and your sister my very best wishes.

    Sylvia

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  • koala55
    koala55 Member Posts: 5
    edited March 2016

    I have triple negative - Grade 3, Stage 2 - 3 with one to two lymph nodes involved. Had 12 weeks of taxol with the carboplatin added each 3 weeks. Then surgery to removed the lump and quite a few lumph nodes. The lump had reduced significantly from its 3 x 4 cm starting point. Pathology results showed a pathological complete response which is obviously a good thing. Am now doing 4 rounds of AC. Then radium. The first 12 weeks of chemo were fairly good but the AC has been more challenging. Hope you get some answers around best way forward for your sister. There seems to be many different approaches depending on wherer you live. I am in Singapore.

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  • Yvette66
    Yvette66 Member Posts: 17
    edited March 2016

    Hi Smoge:

    I am in Australia and was set to receive AC/T. Just as I was completing my AC I came across information about Carboplatin. I took the information to my husband, who is a physician, and he agreed there was enough evidence to approach my Oncologist. Luckily, my Oncologist had been to a meeting the night before on exactly this topic. He agreed to add Carboplatin to my remaining Taxol treatment. He agreed that the two studies from the 2015 San Antonio Breast Cancer Symposium were good evidence that Carboplatin can increase the chances of pCR. Your sister may need to seek another opinion.

    Best of luck to you both!

    Yvette

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  • Smodge
    Smodge Member Posts: 3
    edited March 2016

    Hi,


    Thanks for the information.

    Sylvia I will look at the UK TN page. My sister is stage 2b I think or even 3 (2.2 cm lump with at least 2lymph nodes IDC). Thanks for your words of encouragement and information.

    Koala55 and yvette66 thanks for sharing your experience. The more research I do the more carboplatin seems a good option I'm worried that my sister is not getting the best treatment. I think the UK can lag behind in changing/ adopting new treatments. I will print off all the data and speak to the oncologist again.

    Thanks Smodge x

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited March 2016

    Hello Smodge,

    Thank you for the extra information. It is good that you are there to help your sister. It is always useful to have that extra pair of eyes and ears. If you and your sister feel that the carboplatin in addition to the offered chemotherapy will give you peace of mind, then you should express that to the oncologist. Never be afraid to speak up for yourselves. It is always good to make notes at appointments, otherwise it is easy to forget information.

    You are right that we do tend to lag behind a bit in the UK and we all need to push for what we want.

    Wishing you all the best. Keep in touch and let us know how things go. During chemotherapy your sister needs to drink plenty of water, get a lot of rest and keep looking forward with a positive attitude.

    Fond thoughts.

    Sylvia xxxx

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  • placid44
    placid44 Member Posts: 497
    edited March 2016

    Smodge,

    At a seminar for TNBC that I recently attended, the oncologist said carboplatin can be helpful for braca+ in particular. Benefits for others were not as clear. On the other side in both cases is potential toxicity, ie does one have to stop chemo due to side effects of carbo added on top of taxol, which could mean that one "loses the life-saving benefits of taxol." Definitely a good topic for discussion w your onc

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited March 2016

    Hello placid44,

    I was very interested to know that you had recently attended a symposium at which an oncologist had said that carboplatin can be helpful if a patient is BRCA+. That is very important information for us in the UK. Smodge's sister has only recently been diagnosed and there are not a lot of details. Perhaps Smodge will post to let us know whether her sister has had this genetic testing. I know that in the UK whether you get genetic testing depends a lot on your age and your family history. The younger you are the more likely to get it.

    Since you were told that the benefits are not clear for others, that gives a patient food for thought. Since all the chemotherapy drugs are toxic and with side effects, adding a fourth drug to the three in the regimen may not be advisable. We have all been told that Taxol and Taxotere work well for TNBC, so that may be sufficient.

    I see that you are coming up son for four years since diagnosis. Keep up the good work.

    Fond thoughts.

    Sylvia xxxx

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