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Introduction and impact of drug shortages - Carboplatin

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njdogmom
njdogmom Member Posts: 181

Hello to all. So glad to have found you! Cancer is a lonely place.

I found a lump in my right breast in January and went to my primary care doctor the following day. She wasn't able to feel it but ordered a mammogram and sonogram. After calling the breast centers recommended by primary care doctor, I was given an appointment 5 weeks away. With some pushing and self-advocacy, I was able to find an imaging center that could fit me in in 3 weeks. The radiologist called the surgeon directly and set up an appointment for the following day. A biopsy was done on site and within a week I had the pathology results - TNBC. The surgeon ordered a bilateral breast MRI for the following week.

Some friends and neighbors suggested that I get a second opinion so I booked an appointment with a practice that came highly recommended. It was suggested during that appointment that I consider a drug trial. The rabbit hole included a new biopsy, a new bilateral breast MRI, an eye exam, a CT scan and more bloodwork. The CT scan revealed some nodes on my lungs so I was sent for a PET scan. The PET scan showed my hyper-metabolic breast cancer and mild uptake in one of the nodes. After a couple of weeks of deliberating, the trial wanted a CT guided lung biopsy. I highly recommend you think twice before having one. I complied and the biopsy showed that the node, while a concern, was not metastatic breast cancer. The following week I was told I was not accepted into the trial.

Three months have passed and I am finally being treated. I started Carboplatin + Paclitaxel + Pembrolizumab (Keytruda®) followed by Cyclophosphamide + Doxorubicin + Pembrolizumab (Keytruda®) last week. I had my second infusion this morning. During my visit with the Oncologist, she told me that there's a national shortage of Carboplatin and that we might need to change our treatment plan.

I'm trying so hard to be brave. I'm trying so hard to do everything my doctors ask. I'm feeling a bit exhausted and defeated and the journey has just started.

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  • cyathea
    cyathea Member Posts: 330
    edited April 2023
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    njdogmom, I’m glad you found us! You have had a difficult road so far. Please know that the first few months tend to be the hardest from my experience and from what I have read on these forums..

    Speaking only from my experience, doctors tend to start with the drugs that are less expensive and/or approved by insurance, NOT the drugs that might be the best. In my case, I started out with Carboplatin and three other drugs, but due to some severe adverse effects, I was switched to Abraxane. I was able to tolerate that much better. I was told that the reason why Abraxane is not used first is that it is more expensive. So, if there is a shortage of Carboplatin, this might end up being a silver lining where you might get switched to a better drug.

    I'm not TNBC, so I hope some others will chime in to give you some additional encouragement. ((Hugs)

  • cookie54
    cookie54 Member Posts: 658
    edited April 2023
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    Hi njdogmom I'm sorry you had a rough start it is all so overwhelming at times. I am not on carbo but was previously however I just wanted to lend support. I am happy to hear your lung biopsy was good! Things will settle down and you will get into a routine and will build up trust in your team. Unfortunately there have been shortages on several chemo drugs but our docs always have a backup plan. They have their list of drugs in the arsenal that have been proven to work with TNBC. I know it throws you off when you finally got your plan and a wrench was thrown in the plan. As hard as it is try to remain faithful and believe your MO is here to cure you and believe that it will happen. TNBC responds well to chemo and you have two doctors on you side which is a bonus.

    Sending positive vibes and strength to carry you through. Hugs.

  • moderators
    moderators Posts: 7,907
    edited April 2023
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    njdogmom, we are sorry for what you're going through, but glad you've found us! As you can already see, this community is a very supportive and encouraging space.

    Besides the TNBC forum, we'd like to suggest that you join also the Starting chemo April 2023 thread, started by iamnobird , where you can connect with other members going through chemo at the same time, and share experiences, tips for going through chemo, and more.

    We hope this helps. Please feel free to contact us if you need assistance with this or anything else!

    The Mods

  • njdogmom
    njdogmom Member Posts: 181
    edited April 2023
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    Thanks so much for all the encouragement!