Hi all, thankyou for taking the time to read my post Im looking for help to understand where my husband is at and what may be coming next. My husband was diagnosed with a stage 3 tongue cancer in march of this year on May 10th he had surgery to remove the tumour and approx 65% of his tongue, they grafted a section of his arm to replace the tongue, during surgery they removed several lymph nodes and found cancer cells had 'leaked' from one of these nodes into his body. He is now in week 4 of a 6 week radiotherapy program with 2/3 sessions of chemo (cisplatin) at week 1, 4 and possibly 5. They have been reguarly taking bloods and scans and have now told him that the cancer has metasised into the 6/7th vertabrae in his spine but is not yet a tumour and is a 'mass' they have said that this is "incurable" but manageable. I understand that this metastatis is not a secondary cancer but is the same tongue cancer sells that have moved to a different location but i dont know from what they have said about being 'incurable' does this mean a terminal diagnosis are any further treatments purely palliative ?? I have been waiting for his doctors to call me since friday as i cant be at the hospital with him because of the children and the distance they are now talking about having a meeting with us on Thursday but that is another 3 days away and my head is spinning already i just cant wrap my head around what is being said can anyone please help thankyou so much x

Welcome to OCF! Im so sorry to read about what your husband has been thru. I will do my best to assist you as much as possible. Please understand that our site is made up of OC patients/survivors and caregivers. We dont have the knowledge or training medical professionals do, but we have learned from going thru this ourselves.

It sounds like your husband is staying in the hospital while getting his rads. If he is in week 4 of 6 then he probably is feeling pretty lousy. The radiation builds up making the treatments get progressively more difficult as more side effects are occurring. From what you explained, it sounds like your meeting Thursday is going to review exactly what you described. With the spread of the cancer into your husbands spine, the doctors are not able to completely eliminate it. The treatments he is continuing to receive are only to manage the cancer probably in an attempt to keep it from spreading further.

Im sure this probably sounds like a long shot but there is a newly available FDA approved drug that has shown huge promise in working with the patients immune systems when the cancer has spread to the lungs. Im not sure if this is an option for your husbands situation, but at least its worth a mention. These new immunotherapy drugs are called immune check point inhibitors. I suggest asking what his doctors think about using Opdivo (nivolumab) from BMS, and Keytruda (pembrolizumab)‎ from Merck.

Wishing you all the very best. Please stop back and keep us posted.

Christine thanks so much for your reply xx yes he is staying in hospital for treatments because we live so far away and it is a plane journey away. Yes he's starting to feel pretty rubbish now and was in fact due to have a second chemo session today but on blood results they decided his levels were too low for him to have the chemo today so they will try again on Thursday which now means we probably wont get to have the meeting with the Consultants. I am trying to understand the spread to the spine, and their use of the word 'incurable', you mentioned that the continued treatments are probably an attempt to keep it from spreading further although they have said that until the mass forms into a tumor they wont start the chemo to treat it. I have read info online about the prognosis for patients of HNC after a metastasis into the bone that does not seem to tally with what the docs are saying to my husband but im wondering if they are being selective in what they are telling him due to his mental health state at the moment as he has had to have psychiatric counselling whilst in hospital. I still have not had this promised phone call from the doctors and it seems now that this meeting will now not happen on thursday so I am left with little to no information again. His blood resaults from today I have though maybe these could help shed some light on it as I confess to not understanding all of this

HB 90
Neautrafils 1.2
WBC 2.0
Calcium 2.25 but was as high as 4.8 last week

Thankyou for your help Christine and for the info on the new immune drugs i have made a note of these and will research them now and make a point to discuss with his doctors when i finally do get to see them xx

Im one to always look for the positive in things. Since your husband is in the hospital while undergoing treatments, he is in the right place for help with anything and everything that could develop.

When a patient is undergoing chemo with rads their blood counts will be off. I remember my numbers were bad for years. I must confess without the correct blood level guide with the blood levels Im unsure of what normal ranges would be. Remember, I do not have any medical training. If your husbands (I think its his white count) numbers are too low, he could be given a shot of neupogen. This is common among cancer patients, Ive had it a few times.

Depression is prevalent among OC patients, even caregivers can be affected and need some help as well. Think of the psychiatric counseling as just another tool to help your husband. When you finally do speak to the doctor, ask them directly just how much your husband has been told and if the info has been filtered at all.

Many patients who have the 3 "big bag" method of cisplatin chemo have not been given their original regime of chemo. I was able to tolerate the first chemo treatment but was so sick fom it, the second dose was cut in half and the third dose omitted completely.

Have you tried leaving a message for the physicians at the hospital? I would have a chat with your husbands nurse and have them make a note for the doctor to call you after they examine your husband. Its worth a shot. Ive found that nurses can be a very helpful as a go-between when trying to talk with doctors.

This link from the main OCF site could be helpful in understanding treatments and all kinds of other things. By educating yourself about OC, it will help to make you a stronger advocate for your husband. Im sure this is terribly difficult for you as well. Please remember to take time for yourself and make use of anyone who has offered to help. Take them up on it! This can help to give you a few minutes of free time to catch your breath or to do something nice for yourself.

OCF Main site--- Treatments, ETC...

Best wishes with everything!!!