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Hi Anna, im Gill, 43 years old with two kids and was diagnosed with stage 4 hypopharyngeal cancer last May. There aren’t too many of us in this club- your sister is the first person I’ve heard of on this forum with this cancer since I’ve joined. I’ve been through all the treatment - initial surgery, 35 rt and 6 chemo . Hard going and lots of sickness but I made it through and was given the all clear in January this year. Make sure she checks in with the team and keeps telling them of her symptoms during treatment so they can deal with them as she goes along. I had lots of anti sickness meds these are a bit of trial and error they get one that suit you. I needed to have a syringe driver fitted as my sickness was so bad. The rt nurse changed the meds every day and a nurse came to the house at the weekends to change it. Has your sister had a peg or rig tube fitted. I had mine fitted the week before rt began and it was a life saver which I still use today. Any questions as you’re going along just ask. Just take a day at a time and try not to think to far ahead.
I am so thankful but at the same time so sorry that this illness and what you have gone through brings us together .
my sister chemo has been put back to the 1st due to teeth in bad condition and has had 4 removed and fillings needed.
No peg yet we have chemo then rt . We need to get through chemo then rt will start .
i am so glad you got the all clear that’s amazing , your a fighter - well done you , your family must be so proud of you and what you e gone through .
im going to send your message to my sister , thank you for sharing xxxxxxxx
Thank you , I’m going to get her humidifier and go to next consultant appointment .
Im going to read your blog and hopefully Katy will.
im thinking of writing a blog from a family perspective , what lived ones can do , what they can expect although everyone different, just one to give as much help I can to others while seeking help for my sister and my family xx
thank you for your kind words. Yes a good idea re blog I started it purely for me and my family as I found it easier to write it down rather than keep repeating myself when some days talking was just too much for me or hubby to keep-repeating. Plus I found it was the only thing I had a modicum if control over. Re humidifier ingot mine from amazon it was about £25 just helped with the night times .
keep in touch sending positive hugs
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz,wordpress.com.
i give a honest account of my experiences with tonsil cancer
Hi Masrer01, I am so sorry about your sister, she is blessed to have you. I was diagnosed the first of June and I'm stage 2 as it has spread to my left lymth node. I had never heard of this cancer and was so glad to find this site. I'm starting chem and radiation soon. I will be getting a g-port or feeding tube when I have port put in for chemo. Hopefully I won't need the feeding tube but had rather get it now than when I'm really down. There is a mouth was called Magic Mouth prescription required to help with mouth pain. Also I've been told to gargle and rinse with 1/4 cup of warm water , 1/2 teaspoon of salt and 1/2 teaspoon of baking soda several times a day . You might mix a pitcher of this to have on hand after starting radiation. Also club soda to gargle with. I'm hoping smoothies and soft food will get me through. They also gave me several mouth and jaw exercises to do for swallowing. Like I said I haven't started any treatments but I know they're coming soon and I'll try to share my experiences. Hugs to your sister and let her know she's not alone.
We went for review with her consultant yesterday, visibly the lump/mass on the side of her neck has reduced and she's coped really well after Chemo round 1, but as the consultant said Chemo builds up but she's done so well and put on 2lbs which for my small frame sister is fantastic.
We have the results of her PET scan few weeks back, they picked up something on her liver and back bone so now being treated incurable and will do another PET scan after round 3. The only way to eliminate spread of cancer at this time would be further tests and at this time the consultant wants to carry on as he said with throat cancer you only have a certain window of time. We remain positive and my sister is certainly being positive and although the youngest and smallest shes showing us shes a string fighter.
Radiation later in year see how Chemo goes she's gone from a planned 3 to now 6 sessions. Your helpful advice will definatly be taken on board and we will do.
Hope you are OK and remember we are hear to listen to your journey xx
Anna if I read this and your other post right am I right in thinking that they're treating your sister as "incurable" as a precautionary measure rather than actually saying it's incurable?
What is a Community Champion?
Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.
Hi Anna, I,m new to this group and like yourself ,i have not come across many people with this cancer one other person when i was having the same treatment as you which was over 2 years ago all what you've said i've gone through
Hypopharyngeal cancer T4 N1 M0 I have a peg fitted mines for life as i have no swallow at all to much scar tissue damage i was offered to have a major op voice box removed and end up with a tracki which i declined.
I'm checked every 3 months and in remission my consultant is very good straight talking which i do prefer i can ask him anything .
I'm back at work leading my life in the best way i can i do have great family and friends as you've also said take one day at a time very true.
HI GILL ,i was answering your message as i have the same as you sorry i am new to this.
Hi Jane, it’s lovely to hear from someone who has had the same type of cancer. I’m coming up to a year out of treatment and still peg feed. I’ve got some swallow function but it’s not very strong so can only really manage liquids. I’ve also had about 6 dilations this year to help me manage the liquids. I’ve sent you a friend request and I’ll try and private message you if I can figure out how to do that. It’d be good to hear how you manage with tube feeding, energy and being at work. All the best
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