Hi my partner has just started his 6 week of radiotherapy and its 5 days since his last (5th dose of cisplatin) and he has started to vomit much more than at any stage in the therapy process? Is this unusal?

Hello Cathy ,sorry to hear about your partner .This is usual for some patients unfortunately as the treatment porgresses especially with Rt and Chemo together it starts to accumulate in the sytem.My husband's vomiting started in week 4 of treatment .Everybody is different some people do not have this problem but a majority do Cathy .

When this becomes as problem you must dicuss it with his hospital team as this is when keeping nutrician and fluids up is of ultimate importance.They will give him anti sickness medication .Again this can be trial and error as there are many different kinds so they will soon get him sorted out .

I ordered maternity sick bags online, called "Chucky Bags" for Paul as we had a 2 hour drive each day for treatment and the wee soul used to vomit 3/4 times on way up and way home .They were great, fitted into my bag and when used clicked down and could be easily disposed of .

It is hard when vomiting along with the RT starts Cathy, so he needs to get started with with anti vomiting soon .Remember if the ones he gets makes no difference, to have them changed till he finds one that works for him .

With this type of treatment nutrician and fluid maintenance is paramount.

Keep us updated,

Bell and Paul.

Thanks Bell thats very comforting. I think we have tried every anti-emetic out there! At least we only have a 20 minute drive. I dont know how you managed. Sadly he has decided not to have his 6th chemo session. They say they aim to get the dose in 5 sessions, but I still rather wish he felt able to do the 6th as I am petrified about the future

Best
Cathy

Hi Cathy ,it is hard road you are both travelling on butkeep strong you will get through this .You need to just keep pestering till you find the right anti-emetic .Is your partner managing to eat and drink ok or does he have assisted peg feeding at this point ?.

Paul had a very difficult time with vomitting and couldnt manage the chemo midway through but he had become Neutapoenic ans was a little difficult(to say the least) becuase he felt so ill and eventually through lack of nourishment and fluids succumbed to peg tube ,which had I known earlier would have forced him to have the peg tube earlier but I was unaware of what to expect .

Paul also refused the last cycle of Chemo which was cisplatin and 5 FU as he had had enough and was so ill .What they did was waited until last RT and he was in better health and stabilized and coaxed him into just the Cisplatin to finish.

Paul's vomiting continued for a long while post treatment.Paul was the exception to the rule so this does not mean your partner will be the same .The palliatve care team from local hospice stepped in with a concoction of 2 drugs which he had every day via a syringe driver for a period of 2 months and was changed every day by the local district nurse .This eventually with a low dose steroid resolved things .He then managed to get rid of peg tube and started to eat normally althoiugh his dry mouth and some swelling still exists .He manages this with water and saliva sprays.

This is the worst time in treatment when the RT is making itself felt plus the Chemo on top .Just keep strong and mark the days off and keep on at your hospital team about trying new anti emetics.

Try not to get too down I know that is easy to say and I remember this awful stage vividly .They will get him through this just try to keep him as nourished and hydarated as possible .Paul used to get quite bad mood swings at this stage and was difficult to get him to hopsital some days because he felt so sick weak and tired .His face were so badly burned and his mouth was just shredded and full of ulcers .People used to stare in the car window at him wondering what was going on ,he looked as if I had boiled him in a soup pot,His face now looks great and the strange thing is ...He does not remember how bad things were at that point .

We are all here to give what advice and help we can.

Thinking of you both .

Bell and Paul.

Just for the record when I was getting RT I hardly ever puked more than once or twice a day. But everyone reacts differently.

hi cathy
like your husband i tried every anti sickness drug available and nothing worked.while i was in hospital for the vomiting they brought in a team from the rowans hospice to assess the vomiting and they prescribed a drug (sorry can't remember the name of it)that worked, the bad side effect was it knocked me out all day and night for days and then they adjusted it.keep telling your husbands team the meds are not working and hopefully they will be able to find something that works for him.all the best to you and your husband.love shirl xxx

Thanks so much Shirl. They gave him some dexamethasone to take orallly with ondensteron and that seemed to calm things down enough for him to drink again. He also refused his last round of chemo which probably helped though I really want him to have another dose before the end of treatment ...lots of emotional blackmail going on!

Have to say we ended up getting quite worried last night as his pulse rate dropped to an extremely low level for him...dont know whether it was the dexamethasone combo.. He is better this morning but I cant wait until he is off all these pills.

Shirl, thanks so much for your kindness. I am so very sorry to learn of your recent lumps and bumps. You must be very worried and I really feel for you, particularly as you have to wait so long to find out whats going on. I will keep my fingers crossed for you and wish you well. Big hugs
Cathy

Hi Bell,

Thanks so much for your encouragement. I have to say Chaz has not suffered anything like Paul has. Although he has been sick and his stomache has caused problems throughout, he can still swallow and, apart from lots of phlegm and mucous hasnt had any pain or soreness in his mouth. This really worries me as everyone else here seems to have a much worse time and I cant help wondering whether the treatment is going to be effective : he is only haveing unilateral radiation and in quite a targeted area.

Also wonder why he was only given cisplatin and not 5 FU. I am finding it so emotionally difficult as the staff at the centre say they have thrown the book at his cancer so he thinks he has nothing to worry about. Given that he did not have his tonsil totally removed nor a radical neck dissection and the radio seems quite light I am not convinced. He has refused to engage with any literature about the severity of locally advanced head and neck cancer and thinks I am being negative trying to coax him to undergo another treatment. I will try again but I am not sure I will suceed and really hope we dont live to regret these decisions.

I wish I had know more at the start!
Thanks so much for your support - most appreciated
Best
Cathy

Hello Cathy .Dexamethasone was one of drugs the hospice prescribed for Paul it is a steroid and definately makes the patient feel a lot better to cope ,perks them up and increases their apetite, it was a saving grace for us .Depending on dosage can make a huge a difference and can be adjusted in strength as and when needed .You seem worried about Chaz not receiving the 5 FU along with the ciplatin .The reason for this will be the treatment planned for Chaz will be what is best to target his type of cancer as different combinations of chemo are specified for different types of the disease .Pauls treatment would have been different because he was Nasopharyngeal and the cisplatin and 5 Fu together area standard proceedure for Nasopharyngeal .It is a bit like anti biotics different types for different viruses so I would not stress about this .Even with RT their are different types used for different areas .

Paul had a recurrence recently and had to go to London for more RT .This time they used IMRT for the RT but no chemo, which was so much better with minimal side effects .When I asked why he couldn't have had this type first time round they explained the first time it would not have been accurate enough for the size and area of primary tunour so I'm afraid its a difficult area to pigeon hole .

Try and take a deep breath and make arrangements to speak to the hopsital team who are treating Chaz on your own ! and explain your fears and worries .I did this when Paul downed tools midway as to having his last chemo session because he was so poorly .They said to me that Paul needed time to adjust and get a bit stronger then they would talk to him later and advise about last chemo .Once Paul perked up a little and was in a better frame of mind to take on board what they were saying and also cope with any more Chemo, he did go ahead .I felt better as I had quiet word with them on my own and was able to realx a bit and wait till time was right.This was a good thing as I like you was so worried and began badgering him which made Paul more irritable and defnesive .Does this make any sense ? Cathy .Please keep posting Cathy as it is also a difficult time for you and you have to be strong and positive to get him through his tratment ,if you worry yourself into a state of nervous exhaustion Chaz will pick up on this and he will feel negative .Remember they are giving him treatment to cure this and that is what you have to focus on .

The problem I have found is treatments have come on leaps and bounds and are curing people ,but there is not enough back up there to treat the symptoms of the treatments and side effects caused by them .This is why our Clinic team brought in the hospice team and ultimately it was them who got Paul on his feet when treatment finished. Just keep talking to your team and ask for explanations don't be afraid you are being a nuiscance .

remember we are all here to help in anyway we can .

Thinking about you,

Bell and Paul.

PS. I remember you said he had tummy problems usually when you take Dexamethasone it is a good thing for them to take Omeprazole along with it as it protects tummy maybe worth asking.

Dear Bell,

Thanks so much, you are an angel. I did manage to get him to talk to clinical team last time round and they persuaded him to go for the 5th session when he was ready to drop out - saying the 6th was only an icing on the cake. They have given him 'permission' not to do the 6th as they are looking at his case with reference to ONE study that showed the dose he already had should increase 2 year survival by 7%.

I personally feel that looking at treatment through such a narrow lens is not terribly intelligent and ultimately that providing he is not too unwell, he should have a sixth just to increase the chances of it making an incremental difference. Noone knows how any individual will react to treatment. I feel you just have to maxmimise opps offered to you.

I have read loads of journal abstracts on different treatments and studies and its clear that the medical profession still has quite a basic understanding of the disease although it is improving all the time. There is much controversial evidence out there about which are best treatment plans and each onocologist has their own theory about which to follow.

I dont think I am going to persuade Chaz - today is my last chance as his treatment finishes next week. I just don't know how I will react if he isnt give the all clear in a few months. There will always be the 'what if' but I suppose I will have to live with that.

Bell, you and Paul sound very relaxed about Paul's recurrence. I am so sorry to hear that but very pleased that he was able to recieve more radiation. You have obviously been through a tough time.

I am sure I will continue posting. I think I am going to find the post treatment hard. Up until now I have had this tremendous energy and been almost fully occupied trying to get Chaz through imbetween odd bits of work. I almost dread the lull as it will be full of uncertainty and unfortunately I am someone who goes through life preparing for worst case scenarios as it helps me regain some sense of control!!

I felt incredibly depressed yesterday but am a bit better now and think we just need to try and enjoy each day to the full. Chaz is just so sure he has beaten cancer. Uncharacteritically optimistic. I just hope he is right!

Warmly,

Cathy

Hi Cathy ,you seem better and more optimistic today ,that is great .Chaz has done well to undergo and come through treatment .Recovery time is now ahead and you must take the good days and bad days as they come there will be lttle snags with some side effects as the months go in but will get better.We found our GP very good at this point so wouldn't be a bad idea to have catch up with him also when you are home and don't need to go to hospital. life will soon get back to an even keel.

Paul and I were not relaxed at the time and went into panic mode but have come through .The only thing I can say now is that once you have been through this life is very different but you learn to cope with what if's and the run up to clinic check appointments it has taken me 3 years to adjust to sleepless nights worrying about appointments and what if's .Paul has remained optimistic and I feel deals with things better than I do .I just keep my negative thoughts to myself and have gotten used to putting on a positive front .Most of the time I believe it but there are always moments when I too get depressed but they pass .
Our 3 daughters are great and always remember them saying dad has done his treatment and gone through again and is doing well .So I look at it now as each and everyone of us could at anytime be in a fatal car crash or take cancer and you can't live your life and spoil each day worrying about may or may not happen.

So we have to make the most of our life when we are fit and able, a valuable lesson cancer teaches us.Think we appreciate life as whole now much better .

Wishing Chaz a speedy recovery and keep us updated .

Best wishes Paul and Bell.

Hi Bell,

Well Friday was a bad day. I stooped very low trying to put pressure on Chaz to have the last chemo dose and then felt terrible for having done so. I justfelt so frustrated that one of the chief radiographers at the hospital had encouraged him to form such a simplistic and optimistic view of his cancer which simply doesnt read true with the literature.

In the end I forced him to look at a few websites, and even though they didnt present hard stats about survival rates I know they upset him. He is terribly upset by my sadness and is worried about how I would get on if he were to die. Its funny at the beginning of all this I managed to park my anxeity for me, but it has all come back recently because I am so scared of losing him. We only met about 5 years ago and its my first real relationship. I have travelled all over the world as a careerist aidworker for years and at last felt I wasnt bothered about a career as I had found real happiness here with him.

Anyway, I have decided not to pressure him about chemo and just take each day as it comes (easier some days than others!). His stomache has recovered rapidly now the chemo is over however his neck is very raw and he is exhausted as the excessive mucous is preventing him sleeping. Has anyone any clever ideas about what to do about that? He is also concerned about his heart and I have to confess I am too as his pulse rate has been incredibly variable over the period of treatment. I think we are both secretly terrified about exiting the daily treatment routine when you can always get to see a doctor if you are worried. We should take your advice and get to the GP although I am still angry that they took so long to refer him.


I think its good to constantly remember that we could all go at anytime. It was something we talked of a lot when he was first diagnosed and was really brought home to us last week when one of Chaz's friends contacted him saying that she was lost as her partner had died suddenly of a heart attack the week previous.

I am glad that Paul has the children around him. Chaz has a delightful 13 year old son but he lives so far away that we only get to see him at half terms and holidays. They are devoted to each other and its so sad that they had to miss half term this time because of the treatment. I am looking forward to Alex coming at Christmas as he always raises our spirits so, tho I am terrified of him being upset by Chaz's condition.

By the way, can I ask. Did Paul manage to get treatment outside of your trust? How does one pursue that option? Through GP referral?

I hope you are all having a fun weekend.


Best wishes,
Cathy

Hello Cathy
I hope you don't mind me butting in on your thread but you have raised some issues that are a real reality for us at present and I would like to talk about it.
I appreciate fully your fear of losing Chaz. I don't know if you are familiar with Trevor's history but he had his battle with cancer last year that brought us to this great site and since July this year he has been well and truly in the wars (read 'here we go again' ..... in general chat).
Like you, we have discussed the 'what if's' and have put all of our affairs in order so that we don't have worries we don't need when things would be at their worst.
Unfortunately the news we got at Trevor's follow up appt with his chemo guru on Friday was far from positive and has really put a new focus on our future. We are just hoping that the dr has made a wrong assessment and that scans next Saturday will show some improvement following the r/t and chemo. They've been right all along so far but we can hope for a miracle ~ just a teensy, weensy one would be great.
Unlike you and Chaz, Trevor and I have been together for almost 29 years (we had both been married before)and believe me, facing the prospect of losing him makes me feel like someone has parked their truck on my chest. I don't seem to be able to get enough oxygen. He is such a good and loving man who doesn't deserve what he has had to face, not once but twice. I hate to see him battling with this situation. He has so much to live for. We have faced so many battles together but nothing could prepare us for the current situation.
At this point we are thinking of having a party so that Trevor can catch up with everyone he wants to and that way, if he gets sick, he will have done what he wanted and if we get that miracle and he doesn't get sick, he will have done what he wanted! Either way there should be a whole lot of lovin' going down, lot's of laughter (because we are a weird lot with very strange ~ sick even, senses of humour), some great music from the past and a terrific lot of reminiscing. It can only be a good thing, provided Trevor can find the strength.
Facing our mortality opens the way for a new honesty as neither of us wants to be second guessing what we think is the right thing to say or do. We can all get swallowed up in worrying about someone's passing when, truth be known, ANYONE could be struck down in just a moment and there might never be the chance to say and do the things you want/ed to. As sad as our situation is, I hope we are able to live every moment together and not waste one opportunity to say and do what we want to, what is important.
I'm sorry that I am 'waffling' on. It's the middle of the night. I should have been in bed ages ago and I don't know how to put into words the things that are going through my mind and that I am feeling. Thanks for bearing with me!
All the while we are dealing with Trevor's illness and the concentration he has had since his op in July on how much time he may have left, I am aware that it could be my funeral that needs arranging before his, simply because life is like that ~ who knows when any of us might leave this earthly plane? We focus on losing someone because they are ill, when our own lights could be switched off without warning. I would like to share with you an extract from Marcel Proust a French novelist (1871-1922). It's about death and dying (I don't think it's morbid, but then again ~ I did say we are a bit weird!) and I think it brings home the fact that we should ALL be making the most of every single minute of every day that we have with our loved ones because one never knows what is around the corner. This present moment could be our last so lap it up and then if it does turn out to be the last, at least we will know we made the most of it.......
"We say that the hour of death cannot be forecast, but when we say this we imagine that hour as placed in an obscure and distant future. It never occurs to us that it has any connection with the day already begun or that death could arrive this same afternoon, this afternoon which is so certain and which has every hour filled in advance".
We can all find something to regret if we look back on our lives but cancer makes us face up to the possibility of a shortened life expectancy and that gives us the chance to make sure that nothing in our future will give us cause for regret. We have to choose what matters and what does not and act on that choice.
Oh dear. I fear I will read this tomorrow and those regrets I speak of will rush up and bite me! I'll be sorry I bored you stiff! Just give that man of yours all the love you can, Cathy and no matter what happens, you will be satisfied that the time you had together was the best it could be.
Love from Down Under
Deborah

Hi ,to you both ,firstly to Deborah ,I am so sorry to read your latest posting I hope so much that there is a more positive diagnosis when you go back, Trevor has gone through so much and dererves to get a reprieve.I think the two of you are an amazing couple.Paul and I have been married 34 years and like you I can't bear the the thought of ever loosing him .We have still not had a clear response on whether everything has been dealt with and just pray for a miracle .The only way we will find out is for Paul to go in and have another biopsy as this time it was underneath the original site and not visible with the nasal scope.It has been mentioned but at this point Paul does not want to address it or think about it and the oncology team have not pushed it.I think you put everything so well with your quotes to Cathy and that was What I was trying to say also about living and doing for today and not dwelling on regrets .

I think the party sounds a wondeful idea and Trevor will love it as he always appears positive and lives life to the full .We wish you every miracle that is out there for your next appointment.

To Cathy ,that will be lovely for Chaz having his son for xmas try not to worry about his reaction and just talk him through it .Paul went to London second time round because the treatment there was not available in Scotland as they did not have the IMRT that was needed to be used and could only offer Chemo here .Our Oncologist team approached London and Dr Nutting and it was sorted out via the national health service so we did not need to go private thankfully.

Our GP also has been excellent through recovery as any problems encountered in between clinic visits he dealt via the oncologist nurse who we had to phone if anything was worrying us and she would then phone GP and he would write out any prescriptions needed for example infections and thrush etc .

Try and enjoy Chaz being home now and in recovery with out the trail to hospital for treatment.Each week that goes in he will get stronger and when he is tired just let him sleep.

Keep us all in the loop.

Best wishes
Bell and Paul

Dear Deb and Bell,

I just wanted to let you know that I have read your incredibly moving posts and am very grateful for the sharing. I will reply properly in due course. At the moment I am working on something that has to be finished tomorrow and also trying to prepare for the final meeting with the onological team tomorrow. Finding this forum has been really empowering as I am fairly sure they only conduct bi monthly check ups here. As tonsil cancer patients in other parts of the UK get seen by consultants monthly, I am going to demand Chaz gets the same....

Will let you know how it all goes in the next few days. In the meantime keep strong. Deb I love the party idea and do hope Trev is up to it.

C