CindyJ

I’m no expert but as someone who’s been riding my mother’s oncologist for four years regarding her LDH number I can offer the following. My mom’s number has spiked several times close to your number. Her doctor always has to remind me that the LDH is not the best tumor marker, but is all they have for melanoma. Lots of things can make the number spike… an infection, an injury somewhere in/on the body, even how the blood tube was handled before testing. Since you just had a clean PET, I wouldn’t be concerned with a number that one testing is showing. Hope this helps ease the mind a bit. Best wishes!

Hi Mike, my mother is in the following trial. They tested part of her tumor to find mutations, then matched them with current targeted drugs that specifically treat those mutations. Her test showed a couple of different amplifications, so we started on one, with Ibrance, and it’s working, for over two years. The new field is called Genomics. Maybe it can help you. Best Wishes! https://clinicaltrials.gov/ct2/show/NCT02693535?term=Targeted+agent+and+profiling+utilization+registry&cntry=US&rank=1

Prayers for you Nick. May God hold you in his loving arms and heal you completely. Amen.

Glad I checked the board tonight, that’s great news Tony! My mother is one month shy of taking Ibrance for two years. They started her on the max dose, 125 I believe, but after a couple of hospital stay infections (leg were her lymph nodes were removed in her groin) and really low blood counts, especially abs neutrophils, they’ve moved her to 100 to 75. She’s been at the 75 dose for over a year and doing extremely well. 

Side effects are tolerable for her, she’s really tired a lot (but she is 81), and Ibrance really messes with the blood counts, especially white, red and platelets. She used to have to get a weekly blood test but about a year ago it’s now monthly. Her body has adjusted and with the seven days off, has a chance to bounce back blood wise. She was warned in the beginning to stay away from sick people and wash her hands often because of the lower white blood cells.

Her first three PET/CT scans after starting Ibrance showed her pelvic tumor decreasing rapidly and then it was gone along with a suspected lung tumor that was never tested. Because of the study, she still gets her PETs every three months but we feel that although it’s a production for her, we stay on top of things that way. No word on how long she’ll be on it, since the study is so new. But her Oncologist thinks as long as it’s working…

During her last month’s Oncology appointment, our Doctor told us that because my mom is doing so well on the drug, they have prescribed Ibrance to three other patients with the CCND1 mutation (don’t think they’re melanoma) and it’s working for them too! So exciting!

Let me know how you do. We’re both praying for excellent results! Take Care! Cindy 

Has he had a PET scan? A PET will tell you if the nodules are active… if they light up on the scan and produce a SUV number. The higher the number the more likely it’s cancer. That might give you peace of mind. My mother has lung nodules that aren’t cancer. She’s very old, but it’s possible they represent nothing of significance in your young son.

Hi Tony, yes my mother is in this trial study https://clinicaltrials.gov/ct2/show/record/NCT02693535?term=Targeted+agent+and+profiling+utilization+registry&cntry=US&rank=1

They did a genomic test on her tumor early last year after immunotherapy failed, which provided two specific mutations. One is CCND1 amplification. They put her on a breast cancer drug, Ibrance, which blocks that growth. She has been on it for a year and a half and though her tumor burden was low to begin with, she went NED six months ago. We did have a scare this last PET but it turned out a new lung nodule is pneumonia related.

Her oncologist is one of the doctors in charge of this study in the Salt Lake area. He really believes this is the future. Good luck with whatever you decide!

Hi Mike,

Have any of your tumors been tested for the exact mutation? My mom, stage 4, did and found she has the mutation CCND1 and was put in the trial study called TAPUR (country wide). She is taking a breast cancer drug called Ibrance specifically for the mutation. It has worked. She is currently NED. I wish you all the best! 

Same sort of situation happened to my mother. She had a “blister” on the pad of her foot that really hurt her. When we saw her regular doctor he told her to soak her foot in vinegar and water. It receded but then came back bigger and uglier, definitely ulcerated. I took her to a dermatologist who did the biopsy. Before they would do surgery (or not), the oncologist had to biopsy one of the nodes found in her lung. Came back negative and during surgery, a bunch of groin lymph nodes came back microscopically positive. Had CLND. Year later had spread further up chain. Tried Pembo but now on Ibrance (breast cancer drug) due to her specific mutation. So far working. I pray they find a treatment that works for your son. Oh, and my mom even went to a podiatrist too, who said I dunno..  

Hi, just more info for your back pocket. My mother is in the following trial. Her mutation test showed her to be CCND1 amplified. They put her on Ibrance, a breast cancer drug. This study is using another drug for NRAS without further mutations detected. My mom had another PET Wednesday and is now NED. Best wishes for you and your husband!

https://clinicaltrials.gov/ct2/show/NCT02693535?term=Targeted+agent+and+profiling+utilization+registry&cntry=US&rank=1

 

On my parts. LOL. Thanks for the giggle! 🙂

Hi, hoping I’m being helpful… in Australia, they are testing Bortezomib or Palbociclib against the mutation TP53.

https://clinicaltrials.gov/ct2/show/NCT02645149?term=Palbociclib&cntry=AU

Not sure if the similar trial in the U.S. is too, as they don’t list all the mutations they are working with.

https://clinicaltrials.gov/ct2/show/NCT02693535?term=Targeted+agent+and+profiling+utilization+registry&cntry=US&rank=1

Info to keep in your back pocket. Best wishes!

Thanks Tony! And so glad you are stable!! I agree, finding out your specific mutation(s) is something you can keep in your back pocket if needed down the road. Let us know what they find. Not sure if my mother and I stumbled into the perfect storm, but in our experience, it seems this is the way cancer should be treated instead of a one shop deal. Fingers crossed for you in the future!

This is the trial my mother is in. Great results so far!