Having a look at the publications (unfortunately, I have access to most academic journal databases due to my background..) around the clinical trial for chemoradiotherapy as a means of controlling advanced H&N cancer, it looks like the clinical trials conducted to determine the efficacy of the treatment used the '3 Big Bag Cisplatin' approach which is why most doctors recommend this.

It was reassuring to know that there was significant improvements in overall outcome for patients who had chemotherapy along with radiotherapy if the cancer was considered high risk (multiple lymph nodes, Extra-capsular spread) and that the extra strain on the body of having these toxins administered was justified..

However, it does state that the long-term side effects for this type of treatment are significantly worse hence why most patients treating earlier stages of cancer are only administered Radiotherapy.

Update:

We are now 25/33 Radiation & 6/7 chemo treatments down and on the home stretch..

Side-effects from the chemo are minimal, but the radiotherapy is now taking it's toll with Jen complaining about thick saliva and pain in her 'original' tongue + swelling of the scar tissue where she had her neck dissection but this is considered to be a lot less than what a lot of other patients go through around a similar time phase. Jen's major concern is the taste of food and she is having mad cravings for a variety of different foods but gets disheartened by the fact that she can only have soft foods for now with no taste whatsoever..

Still defying the doctors and nurses with Jen only using Paracetamol to control the pain although it looks like the lignocaine and oxycodone will be required soon as the pain level has slightly increased over the past few days.

More importantly, we have only lost approximately 2kg (4.5 pounds) since the start of treatment but this in fact more than what she was weighing post-op as we put on around 4kg between the operation & start of treatment. Doctors are still keen to put in the nasal gastric tube just in case, and will weigh her again on Friday before making a final decision.

The MO, RO and nurses are rather surprised that we have been able to cope so well till date, and despite knowing that the next few weeks to come will be the most difficult, I am grateful we have been able to hold up as well as we have been able to till date.

Hopefully, this provides others just about to embark on the journey some sort of hope and I can't wait till treatment is completed and I can confidently say that the cancer is gone!

Will keep you posted once our final treatment is completed next Friday, and thanks everyone once again for your support & responses back to the questions at hand.

Kind Regards,
Jay & Jen

Jay, that is sooo great that Jen is doing so well, and so close to being done. I know how much you both must be looking forward to next Friday, and marking the days off on the calendar.

I hope she can get through without the NG tube. I had it in hospital, and despised it even more than the trach. It actually got removed early due to problems.

If it is a type of food, as opposed to a texture of food, she can puree in the Magic bullet. The texture sucks, but at least it's the semblance of other food. When it's not all soup or yogurt, she may get some other flavour out of it. I was sure sick of soup myself.

All my best to you both for the next few weeks!

It's encouraging to hear that your wife is doing so well. My husband is struggling a bit but we are getting really good care here at the hospital. I hope at some point I will be able to give a more positive report. Good for you Jay and good for Jen!

Thanks all for your words of encouragement all.

We got the magic bullet and have definitely got our money's worth over the past 3 months with it, and I am coming up with all sorts of interesting ways to pack in as many calories as in small of a drink possible. The Resource 2.0 (400 kcal in 200ml) + Manuka Honey + Peanut Butter + Whey Powder + Full cream milk into the magic bullet = one hell of a calorie punch.

The NG tube seems like it is a necessary evil at this point of time, as the pain has gotten worse and swallowing is getting difficult by the day. We will find out on Friday if we will need it inserted for the next 2-3 weeks or so but this will be determined by her weight rather than anything else. Reading on these forums, I know it will only get progressively worse even after treatment ends and despite Jen staying off it for so long (She dreads it as she had the NGT in for 10 days during op), I just want to be safe as I know the calories and fluids are most important at this point.

On another twist of events, we were told today that her White blood cell, Neutrophils, Lymphocytes & monocyte level's were too low and despite me saying we did our 6th session, it was actually cancelled this morning and we were both a bit shocked as I thought the Carboplatin would have been easier on the counts and there were no notable symptoms from the drop in counts.. We meet the RO & MO on Friday but it looks like we will have our last administration next Wednesday making it 6/7 Chemo sessions overall for Jen.

Don't know what impact this has on overall treatment effectiveness but from what I can gather on the forums, the results are pretty much the same by the look of things - is this true?

7 Radiotherapy sessions to go now and I am praying very hard indeed that things don't take a turn for the very worse over the next couple of weeks considering we have done so well thus far..

Prayers and thoughts go out to everyone else going through or has gone through treatment and I encourage everyone to keep their head up high as you are all champions.

Jay, I know the waiting and hoping is so exhausting, especially with new baby Hunter, and I hope you have family to call on for help. I can almost "hear" how tired you guys are in your posts.

I wish there was something I could say to make it easier for you. Please know you and Jen are in my thoughts often.

Hey there... she's doing it great I know being there and watching her go through it is hard but she is doing very well despite how bad it seems. She will likely need the pain meds for the last week for first week after.. I did for the week after but she will hopefully start to feel better towards the end of the two week completion mark - not a big change - it will be baby steps.

You are doing great! ;o) take care and best of luck... tell her to rince frequently it will help with the mucous... or spit a lot... not very ladylike but I was a champion spitter by the end - ;o)

1 week: 5 x Radio / 1 x Chemo Session to go

Well our plan must have worked since Jen has managed to keep her weight steady, and it looks like despite the odds we have been able to avoid both the PEG as well as the Nasal Gastric Tube.

Unfortunately, the pain level has increased and she has lost her voice because of constant coughing due to dryness & itchiness in her throat. Hence, we have moved on to Endone / Cocaine Mouth wash + was given a nebulizer to help with the dry throat.

Still taking in 2000 calories+ a day (she is only a small girl - 162cm (5"3) & 51kg (112 pounds) so 2500 is a bit tough!), and this is more of a routine rather than due to hunger or satisfaction from eating.

Both the RO & MO are extremely happy with how Jen is coping with the treatment and also are very pleased with how well the inside of the mouth, throat & tongue looks at this point of time.

Praying every day that this coming Friday will be the first day of officially being 'cancer free' for many many decades to come, and I will make sure to cap this thread off with a summary of our journey thus far..

Thanks for everyone's support and words of encouragement and we will continue to have you in our prayers.

Jay & Jen (+ Hunter!)

Jay,

Just hold on and pray that the few weeks post Tx go as well. For the vast majority of us that's when things get ugly. I didn't get my nasal tube until my 2nd week POST Tx. Good news is that when she finally walks out of that tunnel, it's a slow but rewarding return to her life post cancer.

Jay, that is such good news. You're on the final countdown! She is such a trooper to get through this so well. Looking forward to next week for you!