Carboplatin, rough for you or not? - SHARE Metastatic ...

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Carboplatin, rough for you or not?

Winner123 profile image
10 Replies

Hello all, I'm after a little help in making a judgement please?

My beautiful wife is only 39, her cancer started to progress on Capecitabine so we have just started (second cycle) if IV Carboplatin and Herceptin injection.

She had her first infusion after a big event, surgical procedure and a three week spell in bed so it was difficult to gauge the results.

This cycle, she was up, mobile and functional. We had 560mg of Carboplatin on Friday. She is ABSOLUTELY wiped out still this morning. She cant get out of bed, has only managed to get downstairs yesterday and was only able to sit on the sofa. She's miserable, headaches, tired, just unable to function. She also has cancer in her lungs so breathing is difficult anyway but this seems to make it worse. She's now loosing muscle mass again as she can't move, her legs are getting to nothing and I'm not sure how we get round this. I was told "movement is life" and I agree, this can't be right.

Is this everyone's experience with Carboplatin or is this wrong? It feels wrong. It feels to me like this is either too strong, or just not the right treatment for her?

Any help from anyone with experience would really help us see if this is right or not, I don't think it is.

Leo and Susie Payne. XXX ❤️

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Winner123
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Hopeful4Cure profile image
Hopeful4Cure

Hello Leo, I am responding because no one else has as of yet. All I can say is that you need to let us know her bio markers, Estrogen +progestrone+ and Neg her2 for an example. I have mets in must my bones after a 2016 dx, and this is the second time. I had anastrozel, then ibrance and fasoldex. Now, I am to begin Xeloda. I hope there are others that will respond. I pray for you and your wife.

Winner123 profile image
Winner123 in reply toHopeful4Cure

She's ER-, PR-, HER2 was neg in 2018, now 2.17 so actually positive but low. Is that what you mean? Her CA15-3 was coming down steadily, 63 from last blood test.

Split profile image
Split in reply toWinner123

You should order or get a free copy of Insiders guide to metastatic breast cancer by Anne Loesser. Invaluable companion for newly and not so newly diagnosed patients. Most of your questions and doubts will be answered in that book. Incredibly useful, well researched, recently updated. Best wishes

Winner123 profile image
Winner123 in reply toSplit

Hi. I have two copies! I constantly refer to it m, thank you. It doesn't really cover this issue, I was interested to know how other ladies coped with it. Thanks for the reply.

Hopeful4Cure profile image
Hopeful4Cure in reply toWinner123

Hi Leo and Susie, Sorry for the delay. I was reading this chat and then wondered why I did not see or get your response. So, it seems that she has TNBC, or her2 is a little positive? I agree with the others that she has had a bad reaction and perhaps the dosage is too strong. Prior to taking the meds, did her onc do an allergy test? Prior to me starting Xeloda, they did and this drug seems to work for TNC and ER+ and other non breast cancers. Let us know how she is doing. Blessings

Winner123 profile image
Winner123 in reply toHopeful4Cure

Hey. She has stopped the treatment now. Susie has had some radiotherapy to control chest and help her to breathe. We are about to start Troldevy, fingers crossed again as ever. XXX ♥️

Hazelgreen profile image
Hazelgreen

Hi Leo,

No wonder you are concerned! I am not a physician, but Susie's reactions sound extreme to me. Like you, I would wonder whether it is the combination of the drugs, or the strengths, that is the problem. Perhaps, if you are not happy with what you are hearing from Susie's oncologist, it is time to seek a second opinion. I strongly believe that, when it comes to cancer treatment, even for the young, less can be more.

Warmest wishes always! I'm glad Susie has you in her corner.

Hugs,

Cindy

Winner123 profile image
Winner123 in reply toHazelgreen

Thank you Cindy, I do think the same, lower doses often work without side effects

RLN-overcomer profile image
RLN-overcomer in reply toWinner123

🙏💕🙏💕 for strength, and healing every time I think of Susie, you, and your children. Amen

Winner123 profile image
Winner123 in reply toRLN-overcomer

Thank you for your kind words, it means a lot. XXX ♥️

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