Sister diagnosed with Hypopharyngeal cancer stage 4b

Well this week has been a whirl wind of emotions for my sister and family - we are devastated and scared. My sister starts 3 rounds of aggressive chemo next week , then after that RT.

My sister is 42 and has 3 children all girls ( 24,6 and 3). We are still taking in everything and still have many questions. lots of information to read. I've started to make a list of items I want to get my sister that will help the next 9/10 weeks. We've been told she will suffer sickness, vomiting, diarrhoea, numbness in toes and fingers and loss of her hair. We've been told what to watch for and given emergency numbers etc... so much to take in and it frightens me let alone how my beautiful sister is feeling.

We've cried together, held each other and will go through this together. I'm sure along this journey we will have many questions , looking for advice helpful hints etc. I'm encouraging my sister to join the community, but unfortunately the day she logged in she read something about someone passing and is now frightened. I know my sister and she will join at some point, she just need some time.

In the meantime you all have me...Can anyone recommend items we should get that will help her , make her comfortable over the next 9/10 weeks. Including items that are a must have ?

Thank you for reading, and reading all the stories and journeys on these pages give me peace that we are all here to help and listen when needed. Thank you from a scared older sister looking out for her baby sister xx

  • I can't help you much as my chemo was quite low grade and I didn't have any side effects (that I could discern) though I did have a load of tablets to try and stop the side effects, someone I know had aggressive chemo (not for head and neck) and the recovery was very slow and left him not being able to do much for a long time, she will need lots of support and help getting to the hospital, so get all the friends together.

    On a brighter side there are more of us that survive than don't so she should look to all of us on here years after our diagnosis, I an now 4 years after finishing my radio and chemo and although things are not back as they were I am still alive as are most of us on here, in fact that should be all of us and some many more years after treatment.

    Tell her to try and stop worrying and take things one day at a time as you can over think the bad bits as not everyone reacts the same to the treatment.

  • Thank you so much. 4yrs after finishing RT and Chemo well done.

    You are right at the moment we seem to focus on the bad bits.

    We don't have a big family, just me, my sister and Dad, her partner and elder daughter - we are planning to meet Sunday to go through treatment and the plan for the next few months.

  • Hi my hubby just on the other side 3 weeks past all the treatment chemo radiotherapy rang the bell it’s a roll  coaster he’s was diagnosed with nasopharyngeal cancer can’t operate as it’s to tricky where it is if we can help we are here we have had some brill support from the group myself as my hubby would not sign on to the website

    ButterflyButterfly remember your not alone Butterfly   

  • Did you go to the big meeting (can't remember what it's called) where everyone gets together and go through what they think should be done, all my family came to mine and could ask questions, I think it gave them a better idea of what would be happening to me, I didn't want to know to much as I am a bit of a wimp and just having all the needles stuck in me was/is a challenge let alone the 10 hour OP.

  • Hi Anna,

    It really is a scary time for everyone concerned, not just the patient!  I didn't have aggressive chemo for my treatment, so I'm afraid I can't answer on the practicalities of getting through the treatment, but there is one thing that I would like to suggest. 

    At this stage, it is all about the treatment - what it involves, what are the side effects, and so on.  Very little, if anything, is said about what happens afterwards.  Many people have had the experience of others coming up to them once the treatment is over and assuming that everything must now be back to normal.  They simply don't know, because they can't see, that the after effects of any cancer treatment take a very long time to work through.

    Your sister will need support in her day-to-day life for a while yet, all the more so since she has young children.  Having kids is relentless and exhausting even if you are well, but during and after this treatment regime she will be totally focussed on herself and will have very little spare to give to other people. 

    She may not think to ask, or feel able to ask, for practical help around the house, but anything you can do will be much appreciated.  It may be putting clean bedding on, or taking the kids away for an outing for a few hours, or turning up with a meal, or running a duster and vacuum round.  Anything, really, that reduces the workload of having a house and family.

    Also, it will be very helpful to the girls (all of them, not just the youngest two) to provide an open and non-judgmental space for them to talk, vent and cry about what is happening in their world and how they are feeling about it.  They will almost certainly not want to tell their mum, but they might well be able to open up to you.  They need to have a little advance notice of physical changes that she will experience, like the hair loss, and of things like the nausea (which is very debilitating to some people).  People can cope with change much better if they have some time to get used to the idea. 

    My way of coping with my treatment was to take everything odd, ridiculous, strange or weird that happened to me, and turn it into funny stories for my kids.  I relentlessly took the mickey out of myself and the whole situation, which made things much easier for me and for them.  I know not everyone can do this, but it worked for me.

    Finally, as to the radiotherapy, it will almost certainly affect her ability to eat solid food for a while, so I do have one practical recommendation, which is to buy a nutribullet.  They can puree food smoothly enough that it can usually be swallowed even in the depths of treatment, though that's a whole other story!

    Please, keep asking questions and there will always be someone who will pop up with an answer.  Your sister is very lucky to have such concerned family supporting her - remember also that we are here to support you too!

    Best wishes,

    Josie

  • Thank you so much for the advice, really appreciate people taking time to read my story and give advice. I hope one dya my sister and I can do the same.

    Thank you

    xx

  • Wishing you and your husband all the best - my sister wont sign in yet...

    Thank you for your time replying really appreciate it and feel that joining this group has been a real positive in such a dark time xx

  • We did have a meeting with consultants etc, myself, my sister and her partner attended. We meet the Chemo nurses Wednesday who took us through what to expect. On Sunday we all plan to meet - my Dada and my sisters elder daughter to go through the next few months and what support we need to give.

    10 hour Op OMG - well done to you that's a long Op and recovery from that one.

  • The operation was the easy bit, I didn't know anything about it lol

  • Hi there . I have no diagnosis yet and am 35 with 5,3 and 3 month old. I am out of my mind thinking I have some sort cancer possibly sinus tumor but only symptoms

    have been an enlarged lymph node. I got ent appointment Tuesday and am dreading it . I just want to say i understand your sister must be feeling. I have 3 you s child rearing Nd have no idea how I’m meant to tell them or how I am meant to carry on with everyday life like school run. I know I need to wait for some answers before all this and I pray to god that it turns out to be nothing but I just have this awful feeling inside that our lives are going to change . 

    Sendkng so much love and strength to your sister and all

    of

    you x 

    Thanks 

  • Hi

    Try not worry I know it’s hard and your going out of your mind. It’s easier said then done .

    My sister read a story to her little one (6) tried to explain about the lump and what medicine mummy will need , she asked her if she had any questions at the end - she was told mummy I like your lump and when will you start your medicine . 

    Its so hard , scared what the children will see but as a family we will pull together and support my sister and her little ones and not to forget her older daughter x 

    try to be strong keep me posted I wish you luck and will be thinking of you x

  • Hi Anna, it sounds as though your sister has a wonderful support network round her already. So much good advice has been offered on here but my contribution is that amid all the various treatments that we have to cope with, the one thing that really hit me was the fatigue. For months all I did was languish on the sofa and sleep, which was fine because I'm retired and my family are all grown up with families of their own.

    Your sister's little ones will need support themselves because they won't understand why mummy isn't able to play with them, read stories and at times even cuddles! (I got very depressed at one time). It's a good idea to let the girl's childminder/schools know what is going on at home. They will be better prepared to treat the children sympathetically.

    All the best for the difficult road ahead, Chris

  • Hi Anna 

    this is Hazel I am 10 month post radiotherapy for tonsil cancer 2 r hemo. Isolation and 35 radiotherapy.was guven the all clear if cancer 14 January this year. Did you go to the multidisciplinary team meeting g with your sister .if not go the next time as the more people that are with her the easy it is for someone to take note as your brain can’t take it in I know as our daughter took notes answers when I looked at them on way how I had forgotten more than I had remembered 

    Things to get 

    i was diagnosed mid June and treatment started mid July in the heatwave so I found a humidifier for sleeping at night invaluable.

    a nebuliser which the hospital provided 

    duraphat toothpaste as normal toothpaste too harsh on dental,prescription.

    soft  toothbrush as again normal ones too hard I use curaprox from amazon £8 for 3 even baby toothbrush too harsh.

    i did have a NutriBullet which was good until my mouth couldn’t take any more .

    Has feeding tubes or pegs been talked about ?

    i have a blog detailing my experiences just remember we are all different I found a positive mental attitude is what got me through it  the treatment is brutal but if I can do it anyone can .

    blog www.radioactiveraz.wordpress.com with it being a blog the latest post is first so scroll down  maybe you read it first then show your sister.

    good luck keep in touch.

    Hazel

  • Hi Anna 

    this is Hazel I am 10 month post radiotherapy for tonsil cancer 2 r hemo. Isolation and 35 radiotherapy.was guven the all clear if cancer 14 January this year. Did you go to the multidisciplinary team meeting g with your sister .if not go the next time as the more people that are with her the easy it is for someone to take note as your brain can’t take it in I know as our daughter took notes answers when I looked at them on way how I had forgotten more than I had remembered 

    Things to get 

    i was diagnosed mid June and treatment started mid July in the heatwave so I found a humidifier for sleeping at night invaluable.

    a nebuliser which the hospital provided 

    duraphat toothpaste as normal toothpaste too harsh on dental,prescription.

    soft  toothbrush as again normal ones too hard I use curaprox from amazon £8 for 3 even baby toothbrush too harsh.

    i did have a NutriBullet which was good until my mouth couldn’t take any more .

    Has feeding tubes or pegs been talked about ?

    i have a blog detailing my experiences just remember we are all different I found a positive mental attitude is what got me through it  the treatment is brutal but if I can do it anyone can .

    blog www.radioactiveraz.wordpress.com with it being a blog the latest post is first so scroll down  maybe you read it first then show your sister.

    good luck keep in touch.

    Hazel

  • 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

  • Hi Anna

    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   .  

  • 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. 

  • HI

    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