SCC HPV+ on right tonsil and nodes treatment plan.

I had seven cycles once per week of cisplatin for my chemo treatment simultaneously with 5 treatments of radiation per week. I had 6 weeks of induction chemotherapy with carboplatin and taxol prior to that. I will say the nausea potential was greater with the cisplatin. You have to make sure you religiously take the prescribed nausea medication or you will feel sick to your stomach. Frankly, I found the side effects from radiation to be more severe than the chemo.

Sorry it took me so long to reply-I had password issues.

No long term side effects from Cisplatin however I had tinnitus or some hearing loss for a short period.

It is HPV +16

Has anyone in the group had a larynx box remove I'm about to go through that, I'm still kinda in shock but is this a good decision, they find cancer on the top of my vocals cord?

Good morning
My 72 yo husband was diagnosed with HPV+ SCC Right tonsil) last May. He was T2N1 (3 nodes under 6cm but with PNI, vascular invasion and ENE). He underwent TORS and neck dissection, followed by 60gy radiation and 6 weeks of carboplatin (they did not recommend cisplatin due to current hearing loss). We were told by our oncologist (MassGeneral Dr and formerly from Dana Farber) that carboplatin was shown to be as effective as cisplatin but is less toxic (safer for hearing impaired, less nausea etc). I asked why they didn’t just use carboplatin for everyone and was told that cisplatin is the gold standard and medical field is hesitant to change. I later looked up the costs. Carboplatin is more than double the cost of cisplatin so I suspect insurance won’t cover carboplatin unless there is a medical reason to do so. Just my opinion but I am not a doctor! As you go through this difficult journey with your husband, two things that helped my husband immensely- Fiji water had the least metallic taste and Orgain Vanilla Nutritional Shakes we’re the easiest to get down when he had trouble eating. I mixed in isopure unflavored protein to keep his numbers up. Obviously everyone is different but thought this might help

Hi @duckdogg1943, I believe that members @thomason @phinken @msherfinski had a laryngectomy - surgery to removal of part or all of the larynx (voice box). @deborahe and @jeffk were able to avoid a complete larrngectomy as their cancers allowed for voice box sparing approaches.

Here are some related discussions to see their posts:
– Complete laryngectomy https://connect.mayoclinic.org/discussion/complete-laryngectomy/
- Would you get a Laryngectomy or stay with a Trach? How to cope? https://connect.mayoclinic.org/discussion/new-to-site/
- Lymphedema in the neck after laryngectomy https://connect.mayoclinic.org/discussion/lymphedema-in-the-neck/

Welcome, @dottiem. I was wondering if your doctor had to make a special exception request so that your husband could receive carboplatin? How are you and your husband doing?

I am curious to know how a person that has a feeding tube is able to take medications. I have a number of other health conditions that require multiple prescription drugs daily. I am just beginning my tongue cancer journey and would welcome any feedback from people that have been through it all. I don't want any sugar coating just the real facts.

Most medications can be ground up (inexpensive device found at most pharmacies) and diluted in water, which is then pushed into the feeding tube followed by clear water. A few medications might not be allowed to be taken this way in which case there may already be a liquid substitute or another similar medication which can be substituted whilst on the feeding tube. Your pharmacist will be able to check your meds and determine if some are not compatible with a feeding tube application. It is helpful to have someone help you with feeding tube meds prep and dispensing. Keep a good record of what you are taking and when. It's easy to forget when you have a lot on your plate. The whole process is really easier than you might think.

Thank you for your quick response. I am just starting my journey and appreciate all the tips and experiences that others with my cancer are or have been going through.

Oral meds were extremely difficult for me as my throat pretty much shut down. I could barely drink water so my pain meds were changed to liquid and Fentanyl patches. If I couldn’t get the others down orally we would crush them up and syringe them into the peg tube.