lymphangitic carcinomatosis

[CTGirl1962]

Has anyone heard of this? Does anyone here currently have it? If so, what is the treatment for it? I’m so distraught about the unknown.

I had scans today and there was mention of this in my CT Scan report . I just read it on my chart, so I haven’t had a chance to talk to my oncologist about it. I read about it on line and it doesn’t sound good. I’m trying to be positive. I have no symptoms. Apparently it’s in my lungs.

I appreciate any thoughts.

I treasure my connections on this site. You all give me strength. 🙏🏻🙏🏻🙏🏻

[Kerryd22]

You’ve done your own research so I won’t add any more links. Essentially it’s a spread of your existing disease but it’s different to the way MBC usually spreads to the lungs.

‘Conclusion

We reported a case of rapid, positive treatment response using Eribulin on metastatic breast cancer with visceral crisis and we could quote others. Therefore, Eribulin may be an appropriate chemotherapeutic option in instances requiring rapid symptom control.’

I will include this link to support what I’ve included above but do not take everything it says literally. You will know what I mean if you follow the link. bmccancer.biomedcentral.com...

Eribulin apparently cleared the LC up almost immediately in the quoted case and you will be able to access that drug (I probably couldn’t) so don’t lose hope.

All the best

Kerry

[CTGirl1962 in reply to Kerryd22]

Kerry!! Thank you so much!! I am TERRIFIED!! To say the least!! Thank you so much for your help. This battle has been pretty easy so far and this just dampened my spirits so much. I can’t stop crying. 🙏🏻🙏🏻🙏🏻🙏🏻

This gives me HOPE!.

God Bless you,

Jody

[awesome4ever in reply to CTGirl1962]

Hi CTGirl1962. Kerry has given you some wonderful information above and I will give my thoughts. Researching lymphangitic carcinomatosis on the general web is going to as you saw give you a very negative thought process. My research is through a medical portfolio perspective and I'll also give you some needed hope. Breast cancer seems to be the most common adenocarcinoma primary to cause this. One of the biggest takeaways I read was that the fact that you are asymptomatic makes the life expectancy much more favorable....in the term of years versus months. Eribulin as Kerry mentioned has shown to be a great Chemotherapy drug to relieve symptoms(which you don't have) and more importantly achieved partial remission with the disappearance of pulmonary lymphangitic carcinomatosis. There are several cases reported of this with MBC and other chemotherapy regimes depend on tumor histology.

I don't think any of us can fault you with wanting to cry about this. In some ways, although I'm a big advocate for patient portals but it certainly cause so much anguish when patients read reports before their oncologist and then google things. I know we are all normal. I have a medical background so most things I read don't affect me in the same way as others. When do you get to speak to your oncologist? I would try and arrange that quickly so you can get clarity and hopefully be more optimistic about your future. Take care my friend. There are options out there for you so stay positive.

[CTGirl1962 in reply to awesome4ever]

Thank you so much. I am always so positive and upbeat and this just seems to be the worst thing I could ever have expected. Especially because I’m doing so well, otherwise. Up until now, mets in my bones have been stable and this is all I had to worry about. I’m going to text my doctor to see when I can follow up with her. And,, I agree, the sooner, the better. I also have a medical (pharmacy) background and I know to only read scholarly articles. The information in those are also very informative.

God Bless and Thank you, again,

Jody

[awesome4ever in reply to Kerryd22]

Kerry, Eribulin is an older chemotherapy and as such would be available to you I'm sure in your formulary as well. It is one of the drugs available in the MBC arsenal when chemotherapies are the only left options. Be well.

[Kerryd22 in reply to awesome4ever]

Thanks! I’m hoping the day when I’m down to my last options are a long way off so I don’t really focus on worrying about the unknown. It’s nice to know there are options though and I’m always glad that breast cancer isn’t rare. It’s a well studied disease with a lot of research into treatments although I would rejoice if it became a rare disease tbh.

[Figletf in reply to Kerryd22]

Amen🙏🙏🙏

[love2golfwell]

I'm so sorry you are experiencing this and hope you get some good answers from your doctor and a successful treatment plan moving forward. I'm glad you are not having any symptoms and pray that continues. In the meantime, try to stay positive. Sending hugs and prayers.

[CTGirl1962 in reply to love2golfwell]

Thank you so much! 🩷