Wanna play guitar (update)

FormerMember over 4 years ago

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Hi , As promised a 6 week update for me (Tim) Diagnosis T2N1M0 Tonsil cancer(right) HPV + 16 Treatment 30 x rads+ 6 x chemo.

I definitely have improved! I can do domestic jobs fairly well if I take my time and go for a slow walk. So thanks to the bloggers who said the 6 week mark is turning point. For those of you who have just completed or are 2/3 weeks post treatment, this will give you peace of mind that things DO improve!

Taste. This week though I’ve gone in reverse. Taste seems to have totally disappeared even coffee!
Mouth. I have less mucositis, so a slow improvement there but still feels dry.
Fatigue. This still lurks in the background but is less severe when it catches up with you.
Neuropathy. Probably, my worst side effect at the moment. Fingers in both hands and toes in my left foot have tingling and numbness; apparently takes some time to resolve.
Weight. Have gone to 72.4Kg so a 3lb gain . Sorry for mixed measures.

My main topic this week though is: 6 week Consultant review.

I had a pad with the questions I needed to ask. It was a telephone consultation and all my questions were answered eloquently and succinctly. One question though severely rocked my boat!
I asked: What are the prospects that the treatment I’ve received has eradicated the cancer?
The reply came back as 40-60% !!! This put me in a head spin as I was told for my diagnosis that 5 year survival was in the high 80 to 90% area.

Obviously, you’ve gotta get rid of the cancer before you can benefit from this high rate. Basically 40-60% means the Consultant either doesn’t know as it equates to 50% or I’ve misinterpreted the answer to this figure and it means something totally at odds with survival. At the moment though I’m consumed with the prospect that all the gruelling treatment I’ve received, only has half a chance of working. I then said what happens if it has failed, I was told surgery was the next option. It’s possible we were discussing a different statistic as they are always rushed and want to move quickly on. Plus, I was in a raised state of “hanging on every word” actually talking about my own life. Mathematics was not my strongest topic and I may have got the wrong end of the stick as usual.

The Consultant said I was doing very well for 6 weeks but I was being very hard on myself and by the 12th week I’ll feel totally different. I do hope so.

Can anyone comment or offer any insight to stats regarding diagnosis and success of Chemoradiation All replies are most welcome.

Best wishes. Tim

juliesss over 4 years ago

Hi Tim, thank you so much for the updates. It is great for those of us folowing in your path!

I read your post earlier, I was waiting for someone who knows a lot more than I do to give us all an answer! My thinking would be exactly the same as yours, that is very confusing as your 85/90% figure is correct. I wonder if the percentage from the consultant is because of some people needing more than one initial treatment? eg I remember reading of one case on here where they had chemoradiation but then needed surgery to remove lymph nodes which had shrunk but not been completely cured? Therefore, 1st treatment would fall within the 40-60% but following surgery they now had the 85/90% 5 year outcome. Pure speculation on my part but might explain it?!

FormerMember over 4 years ago in reply to juliesss

Hi Julie, thankyou for your reply. It sounds quite feasible what you say. I will give the Macmillan nurse a ring next week and get some back ground on the subject. I may have got my stats in a mix! I’ll come back to you and keep you updated.

Best wishes Tim

RadioactiveRaz over 4 years ago

HiTim

as we know we are all different. My oncologist s first words were I’m looking to cure you and the treatment s brutal. Maybe you got the wrong end of the stick. Are you h p v positive ? Those tumours have an excellent response to treatment. Again I can only speak my conversation with oncologist

As a general rule any reoccurrence s happen in the first year at 2 year it’s unlikely that any reoccurrences happen we are checked up to the 5 year mark

. Don’t dwell on the negatives keep positive look at us on here.
re your symptoms it’s common once the mucus goes it’s replaced with dry mouth as our saliva glands take a beating even now I get dry mouth and night one use xyimelts snd in daytime sugar free gum.
yes there are some who have to gave lymph nodes removed after treatment I’ve a friend who’s did snd last month he reacted the 5 year mark. Yes at 12 week you should notice a big improvement as well xx

the neural stuff does improve with time it’s early days for you.

Dont stress
. Hazel x

Hazel aka RadioactiveRaz

My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

2 videos I’ve been involved with raising awareness of HNC and HPV cancers

https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

https://oraclehnc.org.uk/signawaycancer

Beesuit over 4 years ago

Unknown said:
Can anyone comment or offer any insight to stats regarding diagnosis and success of Chemoradiation All replies are most welcome.

Hi Tim. The figure you quoted seems at odds to the more common one bandied about which is around 80%. The low percentage is that quoted for HPV negative cancer, but it comes down to averages and none of us are average are we?
The other significant thing about cancer is that it has its own agenda and it’s out of our control so although recurrence is always on our minds our doctors do their very best to cure us.
Tim. I do know how you feel. I had a hotspot on my 16week PET/CT and I asked what would happen if the treatment had failed to be told that salvage surgery was the only option. The idea of all the pain and anguish being in vain was too much to endure.
The longer we stay alive the better our chances. It has taken me a really long time to get my head around what could happen and the worry it engenders. I can stay as well as I can but in the end it’s not within my control. It’s not a fight or a battle. It’s simply down to luck.
Chin up and just get better.
Best wishes

Dani

Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

I BLOGGED MY TREATMENT

Macmillan Support Line - 0808 808 00 00 7 days a week between 8am-8pm

FormerMember over 4 years ago in reply to RadioactiveRaz

Hi Hazel! Many thanks for your reply. My Oncologist said much the same . We are offering you curative treatment, it even said it on the consent form!! The guy quoted the percentage for rads and the increase in that percentage if chemo was added to it. There’s a good chance I’ve got the wrong end of the stick.

My diagnosis was HPV positive 16 . As you say this is the variant with better results and is highly responsive to Chemoradiation

It’s early days for me at 6 weeks . Patience is a virtue and I’d to fast forward 6 more weeks. I’m sure things will be a lot better by then.

I hope you are keeping very well. I’ll update in the next week or so. Keep in touch.

Best wishes. Tim xx

FormerMember over 4 years ago in reply to Beesuit

Hi Dani, many thanks for a sage reply. It’s gave me a different perspective- thankyou. My diagnosis was HPV 16 + which is considered to be highly susceptible to Chemoradiation. You’re probably correct in saying that I was quoted the HPV negative figure. But heyho as you say none of us are average. I’ll check with the Macmillan team this week to see if I’m correct. I empathise with you about all the treatment we’ve gone through, it’s life changing and all we want to be is normal as possible.

Anyway, thanks again I’ll post in a week or so with a progress report.

Best wishes. Tim

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