Update: Husband’s NavDx Test Result Pre-Treatment

Swoosh13

Hi Again,

I posted a few weeks ago we went down to NW-Chicago for a second opinion on my husband’s Stage I base of tongue (left side 1.2 cm on PET 7/19) and 2 involved left lymph nodes so all on left. HPV+ 16 from biopsy. The only reason we made the 2 hr one way drive down was to find out more about their Proton radiation center 30 miles west of Chicago, but on 8/8 when we were there they told us they were booking out until mid-Oct and they felt he’d do fine with their IMRT. They concurred no surgery, 35 rads and 7 weekly Cisplatin, so back we were to our local cancer center where we originally got the same treatment plan from their tumor board. However, when asking our local drs about the NavDx test the end of July they pretty much said they didn’t use that yet, maybe down the road. So thankfully I asked NW’s Hem Onc about the test and they did it immediately and also mentioned it wouldn’t likely even get submitted to our insurance (so why not)? We are getting very much closer to my husband starting his treatment (CT/MRI mask SIM tomorrow) treatment starting 9/5 they think. So today I have my Monday “brain” back on and I called the NW Hem Onc Nurse who set up our 8/8 visit and asked if they had his NavDx test result back yet. They sent it to me through his My Chart and obviously all pre-treatment result as even his biopsy was a FNA of his swollen neck lymph node, he has had no treatment yet. Thank God he still also feels fine, but I can tell it’s weighing on him to get started and be done with it all. So very surprisingly his NavDx was a 15. So obviously it’s positive for an HPV + malignancy which we know. And also his 7/19 PET showed no spread other than the small base of tongue spot and 2 left lymph nodes same side as tongue. Neither surgeon wanted to do surgery as even though it’s Stage I why risk not getting clean margins based on where it’s at then he would still need concurrent rad/chemo. I guess I was somewhat surprised with the NavDx pre-treatment score of 15 but if it’s a useful tool I’m certainly glad we asked for it. Not sure they were going to offer it until I asked. I guess it also somewhat reassured me this whole thing hasn’t spread since he first noticed the swollen lymph node. We even had one Dr at each facility ask him if he felt the node got smaller since he first noticed it (he had told me he thought it had) and he’s been scoped I think 5 times with all his visits so far. So here we are. Trying to do some “fun” things with the grandkids, a concert next week that we bought tickets to months ago, and a crazy funny “R” rated movie called Strays last night (if you’re into dogs and are not offended by the “F” bomb). We needed a good laugh. As I said tomorrow he’s getting fitted for his mask but I’m going along. I appreciate everyone’s commentary as I’ve learned so much on the front end. Soon the hard part.

wbcgaruss

Well, Swoosh, congrats on you folks getting all your research done and getting ready now for treatment soon. It is very nice you are close to home. I am not totally in on the NavDX test yet as far as the situation your husband is in. Since you already know he has cancer and it's verified it seems pretty obvious it will show cancer. Even in finding it in the blood early, it seems they have no defined way of treating it at that level yet unless chemo will work. If chemo won't do it to eradicate it out of the bloodstream I guess they would have to wait for a large enough mass to show on a CT scan. Glad you guys got some time in with the grandkids and wound down a little. As far as the “F” bomb goes it seems to be a part of everyday language anymore, unfortunately.

Wishing You The Best in treatment and recovery

Take Care, May God Bless & Watch Over You

Russ

Duuuukee

Thanks for the update, Swoosh! Best of luck with the treatment!

Swoosh13

https://csn.cancer.org/discussion/comment/1708253#Comment_1708253

Thank you Duuuukee and Russ. He had his mask fitting today and breezed through the morning part (CT making mask) then we had some lunch in the hospital cafe as we had to kill some time b/4 the MRI part. He came out after and was so quiet. I knew why and shut my mouth on the way home. Later he actually looked up the VMAT type of radiation he’ll have and he was more relieved that it’s not like being stuffed inside that MRI with the finished mask for about 45 min. We also found out he’ll have both radiation and chemo in the same off site small campus closer to home for us than the hospital. We did not know they did radiation there and we can also see their own Rad Onc weekly at that location. So logistically Mondays will be his chemo days (7 smaller weekly) with visit every Mon at the hospital at 9:00 with Hem Onc Dr and his labs before we head over for his Rad and Chemo (not sure in which order yet). I do not work on Monday/Tues/Thurs so me being able to drive for him as necessary (especially on chemo Mon’s) and the locations working out today will make this easier on both of us.

wbcgaruss

Glad things are going well and moving forward and thanks for the update and updated details.

Take care, God Bless-Russ