lung mets - what's life like on Chemo?

5 Posts | Page(s): 1 

lung mets - what's life like on Chemo?

by Fiona2020 on Wed Dec 18, 2019 03:03 PM

Quote | Reply

im new to the blog. I have newly diagnosed lung mets (~ 12 1cm lesions) following en bloc and umbilicus removal 2017. MD Anderson is offering chemo (5 day on, 2 week off).

Would you tell me about your experience w chemo, quality of life during chemo, and any other info that might help me decide on chemo versus no treatment? I am otherwise healthy 62yo.

Thanks

RE: lung mets - what's life like on Chemo?

by ToddlerFather on Wed Dec 18, 2019 09:00 PM

Quote | Reply

On Dec 18, 2019 3:03 PM Fiona2020 wrote:

im new to the blog. I have newly diagnosed lung mets (~ 12 1cm lesions) following en bloc and umbilicus removal 2017. MD Anderson is offering chemo (5 day on, 2 week off).

Would you tell me about your experience w chemo, quality of life during chemo, and any other info that might help me decide on chemo versus no treatment? I am otherwise healthy 62yo.

Thanks

I've lung mets from a Thyroid iodine refractory primary, with the larger lesion as large as yours, but the others are diminishing sizes, totalling 10 mL of tumor volume. 

Due to not causing symptoms, oncologist preferred not putting me on TKIs just yet. This decision consolidated when LDN (Low Dose Naltrexone) started making tumor markers go down and lung CTs started showing calcification of lesions. 

I then added Alpha Lypoic Acid to LDN, with no results. Now my cocktail includes DCA, ALA, LDN, B1, Vit D, L-Acetyl Carnitine but it's soon to tell of any effects beyond the LDN one, which accounts for a steady remission. 

What type of chemo is MD Anderson recommending for you ? 

RE: lung mets - what's life like on Chemo?

by Fiona2020 on Thu Dec 19, 2019 12:58 PM

Quote | Reply

Praise God for your remission!! Hope you celebrate

Orignal cancer was rare, urachal adenocarcinoma. Chemo is combo 5FU and Leucovorin, Gemcitabine and Cisplatin 5 days every 3 weeks which might reduce tumors but is not curative. Seems the treatment could go multiple rounds if i tolerate, but i dont' know what that means in real life

If anyone has been on this combo pls share your experience. What questions i should ask MDs?

Thanks so much for reply.

RE: lung mets - what's life like on Chemo?

by ToddlerFather on Fri Dec 20, 2019 12:32 AM

Quote | Reply

I don't think it will be easy to find patients from this exact protocol, which MD Anderson is putting thru clinical trial until at least the end of this year:

https://clinicaltrials.gov/ct2/show/NCT00082706

For me it sounds like a boatload of drugs with a huge toll of side effects. I would refrain from trying LDN or ALA while on such a combo. 

RE: lung mets - what's life like on Chemo?

by Fiona2020 on Sun Dec 22, 2019 05:04 PM

Quote | Reply

thanks for reply! A blessing to chat w real persons experiencing strong chemo.

MD Anderson RN told me side effects are well controled and i should expect fatigue the week following chemo, a week of fairly normal health then back for next 5 days of 5FU, Cisplatin and Gemcitabine...was she was lying?

Really, what i should expect what? Be exhausted, nauseated, depressed, mouth sores, what else? for the full 2 weeks before the next round? A LOT? a bit?

What tips to prepare my husband and me for chemo? I plan to start mid January 2020.

5 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.