My dad's PET/MRI report came and the cancerous growth is still there over the tumor bed now encasing carotid sheath and with new hot spot on right supraclavicular lymph node.

Surgery is not an option anymore as cancer now involves parapharyngeal space. MO suggested Cisplatin with Erbitux as an option. We are not sure if we want to go ahead and further compromise on Quality of life - we'll decide over the weekend and meet MO on tuesday.

Either way, we know that it is almost end of line.

Please don't give up. Christine here has had 3 recurrences. Others the same. Sorry this has happened... Can they surgically remove some of it and then chemo? Good luck... Whatever you decide.

Hi Cheryl, unfortunately surgery is not an option anymore due to several complexities. My father is on semi-solid/liquid diet these days and another surgery, chemo may further erode the quality of life. It is a hard decision that my father and I have to make.. Honestly speaking, I am at loss today and that is why we walked out of hospital to think over and decide.

Eshwar,

I'm saddened by your news my dear friend. Your father is fortunate to have such a loving, intelligent and devoted son, I can only hope my boys become such men.

I hope you and your father find peace in whatever path your father chooses, these things are never easy. Just know your OCF family is here for you both and share in your pain...it always makes it easier for me when I know I'm not alone.

Peace be with you both whatever happens.

Eric

Eshwar, I am very sorry your father is going thru this again. I know how difficult it is to find out everything your father has endured was not enough to rid him of the cancer.

I have gone thru oral cancer 3 times. I consider myself one of the very very lucky ones who has lived thru this. My last round I almost refused all treatments. I thought of my children and realized if I dont try for myself, at least I must try for them. It was very difficult but I got thru it.

Please weigh all options very carefully before making any decisions.

Best wishes!

Oh, Eshwar, I am so sad that your Dad is having a recurrence. It is heartbreaking. You have been and are a loving son to your Dad. I wish you both peace as you move forward.

With love,
Anita

Eshwar,

I am very sorry to hear the news. I am currently battling lymph tumor in same area that has wrapped around carotid. I am ending week 6 of chemo and radiation as surgery is not an option when the carotid is involved. I may have a slight chance at surviving even if the radiation does not kill the whole tumor but only if it moves off the carotid and surgery can remove the rest (a long shot at best).

The news you just received is the news I fear the most. I can still feel my tumor with only one week of treatment left so I am a bit worried even though I know the rads keep working for three more weeks after treatment. If your father has not received rads specific to this area it may be an option. I received a full dose to my original site (soft palet) two years ago and am getting a full dose to this area (70gy) this time around. It is rare they do this but my docs at U of M have 82 cases of re-radiation to tumors that have encapsulated the carotid and some success with it (33-50% survival rate). I'll have to wait to march to get the PET to see if the radiation killed the tumor or if not, the tumor has moved away from the carotid to allow surgery.

I don't know if your dad would be a candidate for further radiation, but you may want to have your doctors� check with U of M and see what they have experienced in cases like this.

My prayers are with you and your father today.

Best,

Eshwar, I am deeply sorry that your father is having to weigh the options of treating or not treating. I can only imagine how painful this decision must be for your father, for you, and for your family.

I'll keep you and your father in my thoughts for peace with whatever is the decision.

You are an amazing caregiver. Your father is blessed to have your help and love to see him through it all. I hope you take comfort in knowing you made a big difference in the quality of his care and his life.

Sending a hug,
Sandy
xoxox

Eshwar, we are in the same boat as you and we both continue to steer as caregivers. There is a clinical trial at University of Pennsylvania combining two traditonally administered breast cancer chemo drugs taken orally, my Dad just started it with the goal of stopping further mets and shinking the existing mets. He is not going to the center daily like before, just once a month and I can report he has energy, quality of life, and no side effects yet. scans a end of january to check progress. pm me if you want more info.

Fingers crossed for both of you!!!!

Eshwar,
what a hard thing for both you and your father. However much we want, we cannot give youth and health to back to our dear ones, but we can give joy and companionship and solice and love. The journey ahead will likely be very hard, Eswhar, but it will be hand in hand. My thoughts are with you.

Kelly, I was under the impression with my treatments that the rads work for 2-3 months after treatment.

Hank,

As my RO explained to me, radiation interrupts the ability of cancer cells DNA to divide and thus reproduce and proliferate. This effect continues in these cells for up to three weeks after radiation is discontinued.

It�s the worst effects of the radiation on the rest of our bodies and healthy cells that continue on for two to three months and those are just the worst effects (pain, swallowing, taste saliva etc...)Many of these problems continue for years in a diminished capacity.

You can post more about how your issues are progressing as time goes on and will find that there are many here who have been through this and will give you all the help and advice you need.

Best

That's very strange Kelly. My RO told me that the radiation continues to work to kill the cancer for 2-3 months after treatment ends which is why they don't do any follow up scans until that time. I don't mean to debate the issue, but I could swear that's what I was told. I should be getting a call from them this week, I will ask for clarification and will share what I learn.

All my love and prayers for you and your Dad.

Dear all, thanks for the best wishes. We had a meeting with the MO yesterday. He adviced Color Doppler for Neck and a Chest X-Ray and MO was kind enough to advice the departments to deliver the report quickly.

He concluded that my dad cannot progress with any active regimen due to his current state of health (Cardiac Efficiency @ 55% from 2D Echo) and poor intake. He has put him on pallative care starting off with Gefitinib 250mg once a day. Next review in a month. MO is hoping that targeted therapy may have an affect as it is still an local recurrence and he just had his treatment completed.

Statistically, Gefitinib does not seem to work on SCCHN and I had asked other options including MTX but MO is inclined to help my dad regain some health before trying other options.

I need your guidance around liquid and semi-solid vegetarian diet options. Thanks

Eshwar,

Your dad has an advantage having a very knowledgeable caregiver so let's get him on the right track nutritionally so his body has the tools for repair.

I'm on a mostly liquid diet and I "eat" 6x per day. I use a protein powder in three of those meals, you can add it to a can of Ensure or Boost and thin it out with water or milk. The other 3 meals I focus on fruits and veggies and calories. I'll mix some yogurt (probiotics) and fruit juice (fresh as I use a juicer) with peanut butter when I need sweet, or juice veggies(broccoli,garlic,tomato,carrots,spinach etc...) and then add olive oil for good fat and calories when I need savory.

That's a quick and dirty version of my diet, I "rarely" eat solids anymore unless I'm really feeling nostalgic.

Tell your dad we are pulling for him, keep your chin up my dear friend.

Eric

Eshwar... Sorry about your dads health, however please don't give up. Maybe the drug they are giving him will stabilize him enough to allow him to heal and regain some weight and immunity. Has he been on erbitux? As it is supposed to work better on non HPV related cancers. You are an amazing caregiver and being localized is still a good thing.

As for diet - here's a place on he web called drink your meals - its run by a member from here - it looks at healthy high protein recipes for peg users and smoothie drinkers. Check it out. It's free I cancer patients. Hugs and good luck! And try circumen caplets if you aren't see if you can mix it in and feed it through his peg (if he has one) and if it's allowed or throw it into a smoothie or soup. Take care!

Hi Eric, thanks for the guidance. My dad also eats/drink as frequently as you do but I think I need to focus on protein part.

Cheryl, doctor has not started off Erbitux probably due to cardiac efficiency of 55%. In the meantime, I am also researching on BioMAb (Nimotuzumab) which has demonstrated good efficacy on Asian patients with less adverse reaction than Erbitux. I'll wait for a month to help my dad regain confidence and health before discussing it with the doctor.

I'll check the site that you had mentioned and I think you are talking about curcumin caplets, right? We Indians add curcumin (turmeric) in most of food that we cook!

Thanks for being there for me, wish I could meet each and everyone of you.

Hi yes I was referring to circumen caplets. I know Indians eat turmeric in their cooking and curries, however my naturopath suggested I take it in pill form. Eric here mentioned 400 mg I think in one of his postings, that's the amount I take according to my naturopath and some of the readings I've done the amount in turmeric is much lower as it is a component of turmeric - so it depending on how much you take in daily you may not hit that mark. particularly if you're having eating difficulties like your father is right now. Maybe opening a caplet and throwing it into his food will boost the amount he's getting. Only you know how much he's getting. Also i know I sound like I'm a major vitaminoholic but really I take only 1 vitamin d tablet, 1 circumin tablet, daily - and a zinc every second day. Every morning I have a breakfast smoothie with vegan protein added in (no soy) it's a mix of brown rice, hemp, and pea protein with other goodies, I also throw in half a cup of smoothie juices, (concentrated no sugar added just fresh fruit) and flax oil, a bit of cottage cheese - almond milk (unsweetened) and my own fresh fruit, berries, bananas etc... I get a good 56 gms of protein, it tastes great, it's filling, and It's low glycemic.
Well. I know you have a lot on your plate. Good luck with everything's, and hopefully his health improves over the next month. Take care.

Hank,

The radiation keeps working for up to three weeks. Its the healing that may be throwing you. If you are looking at a PET scan for signs that the cancer is still active, you have to wait three months. This is because healing cells look very much like cancer cells in a PET scan and the healing from the radiation and chemo can take up to three months. Thus the healing cells may give you a false positive for cancer.

My doctor just let me know that they would be doing a CT on me about 6 weeks out but will wait a full three months before taking a PET scan.

Eshwar,
I was so sorry to read about your Dads current situation. Many have said this already but he is very lucky to have such a knowlegable and compassionate advocate and son. This is such a difficult road to travel but having someone you love supporting and advising you makes it immeasurably easier. I hope that your fathers health improves and that more treatment options open up for you.

Love and Prayers

Sue G

Thinking about you and your father hoping things will improve for him. Prayers and hugs to you!

Thanks all. He is still coping up with the after-treatment issues and mostly on liquid diet but Gefitinib seems to be working for him. Any thing conclusive would be known after the next PET Scan. For now, just standard blood test and X-Rays.

Had emailed his doctor to motivate him as well and he did that yesterday when we went for another review. Hopefully this should bring my dad on track of recovery.

Best wishes with everything you and your father are going thru.

That's great! Glad he's getting back on track!

Update to my OCF family: dad is still holding up. He is still on liquid diet and has lost around 8 lbs so far, weak and has occassional head-ache. So far X-Rays and blood jobs have been clear. MRI late this month to find out if Gefitinib has indeed helped or not.

He is currently visiting his hometown and will be back only next week. Wish he gains some more confidence.

That's great on the clear tests -slow steps... I know it takes time especially because he is older hopefully the chemo is helping. The 8 lb is not good though maybe you can find a way to add more calories to his liquids? Best of luck and take care!

Hi, Eshwar
I'm glad to hear from you and that the test results are encouraging. I think his visit to his hometime will do him good.

Ideas on the liquid diet - I started adding rice cereal powder (for babies) to my husbands protein shakes. Don't know if that would work for your dad, but thought it's worth mentioning. Not sure what you have available in New Dehli, but a stroll down the baby food isle might give you some ideas.

Best wishes and prayers for you and your whole family.
Maria