CRT For seven weeks advice

Blacksheep110750 said:

f anyone has experience with a seven-week regimen.

 RadioactiveRaz 

Have a look at Hazel’s blog linked in her orofile. 

Hi Sorry for late reply I e  been out. Yes I had 7 weeks radiotherapy combined with chemo week 1 week 3 and should have been week 7 but that one was cancelled. I had a total of 70 grays of radio which was 2gy for 34 days mid day to Friday. I too had tonsil cancer HPV driven spread to soft palate and 7 lymph nodes. The radiotherapy was planned to hit right side majorly 75% and  %precautioanr 25% on left side. 
it’s not easy but doable inwas  61 when diagnosed now 7 years later living a fab life. Any questi9ns just ask 

hugs Hazel 

Dear Hazel,

I have thoroughly enjoyed reading your blog and following your journey.

It is heartbreaking to learn of the hardships you have endured. Your journey has been truly extraordinary, and it is evident that you have also encountered numerous positive experiences along the way.

I have taken several notes and have already begun ordering items in preparation.

While the staff at the three hospitals I've visited have been consistently kind and friendly, I've found that pre-treatment information isn't always comprehensive. Therefore, it's been incredibly insightful to learn from others' experiences. This has also provided me with a deeper understanding and helped me formulate relevant questions.

Thanks Wayne 

Hi Wayne. Bless you I’m fine I approached the entire experience as something that needed doing one day at a time some days 2 steps  forward and one step back. Best advise the radiotherapy teams are yiur first point of contact yiu see them daily any issues tell them. If yiure having chemo take the meds I took anti sickness even though I wasn’t feeling sick.  As for feeding when yiu can’t swallow and up yiuve for a peg use it if nit ask for ng tube ti be fitted. Recovery is just as challenging if nit more than treatment but it’s a marathon nit a sprint .Treatment takes its toll but cure rates are high,are you HPV positive? Do your  swallow and jaw exercises daily I still do mine even now they are for life. I did mine in teh car on way to hospital, sat in waiting room any where I coukd. 

hugs Hazel 

Hello ,

I understand that my HPV-positive status is associated with a more favorable prognosis. My initial visit to the physician was prompted by a swollen lymph node, with no visible abnormalities within my oral cavity. I was prescribed a week-long course of antibiotics. Within several days, a walnut-sized tumor emerged at the back of my throat. This tumor has exhibited weekly changes in both size and appearance, which I find quite distressing. Initially, I was informed of a 30% chance of survival beyond one year.

I have found the treatment initiation process to be frustrating, as nearly three months have passed without the commencement of therapy.

I am currently performing mouth exercises and am committed to maintaining a proactive and positive outlook.

PET scan today 

Wayne 

Hi Wayne hpv driven tumours do respond well to treatment but non hpv also have good sucess rates. 
May lump I found in Feb 2018 ignored it as was on holiday thought I had pulled a muscle hue wrong was I. My treatment started 14 July once I got into the system so try not to stress there’s a tryed snd trusted protocol that involves a lot if planning by the radiotherapy teams. Hood pet ct scan was ok still  remember the radioactive substance going into my veins. 

hugs Hazel x

Blacksheep110750 said:

I understand that my HPV-positive status is associated with a more favorable prognosis.

HPV driven cancers are much more radiosensitive because the cancer cells have more marked DNA repair derangement so that they can’t recover after RT. The tumour environment also has more scavenging cells so that damaged cancer cells are cleared away more quickly. Cisplatin inhibits DNA repair too and acts as a sensitiser. 
The treatment for both positive and negative tumours has been the same for years and there is much research in reducing the dose of RT for HPV+ patients. So far the jury is out 

Thank you , Very intresting.

Hello Blacksheep110750,

I had 7 weeks of radiotherapy and 3 rounds of two chemotherapies.  It is difficult, but you can do it!!  Did you start your treatment yet? I am approaching 2.5 years post treatment, next check up this month.  Stick with the folks on this forum, everyone is so very helpful! I found this forum just before my treatment started. I wish you all the best! ~Tara

Hello. I’ve now been in treatment for three weeks. The first two weeks were fairly manageable – the main issues were loss of taste, nausea, and fatigue. But as I’ve reached the end of week three, things have changed significantly. I can no longer eat or drink by mouth and am relying on a feeding tube. My energy levels are really low; even getting dressed leaves me feeling exhausted. Thankfully, I’m not experiencing much pain though.