Sharon?

[Deanne Jenkyns]

Hiya Sharon,
I just wondered how Martyn is doing on the lower dose of Tarceva. Hope all is going well.


Deanne
x

[sharon]

Hi Deanne,
Cant believe how well he is doing! last wednesday he was on the doctors worried list this week he is doing brilliant. He is back to him self today he has been up early (9.30 which is early for him!) he has play games with our youngest Ellie age 8 who is daddys girl.and his whole out look on life has changed. I feel today like life is normal... we enjoyed life and it was just a sunday not any ones birthday,just a day to say we are winning!!! Im sure you know what i mean these days are to be remembered because some days drift intoweeks and you find you have cried most of them and asked over and over again why us we have children we are good people...but any way like i said today has been great...NORMAL...

Sharon x

[Deanne Jenkyns]

Hi sharon,
How fantastic! I'm so pleased to read this, and I know exactly what you mean. It feels good to wake up in the day! Keep me posted as to how things are going. It lifts me so high reading positive news ;D



Take care
Deanne
x

[sharon]

Hi Deanne,
Mart not doing so well this week, it started with back ake, then he felt like he had been kicked in the kidneys, all his muscles hurt, he has had a lot of muscle waste from his rapid weight loss, his skin is hanging off his arms and legs, i wondered if this is why he akes a lot? also i wanted to know if you know what vitamin supplements i could get him to help build him up, we are trying build up drinks called Enshake because somedays he has no energy to even eat which does not help with my constant battle to get him to eat!!! And are vitamins ok to take with Tarceva??
Mart had a bad nights sleep, took tramadol pain killers to take the edge off it, Hospital has given him liquid morphine but he does not want to start taking it, he feels it will be the end if he does. Got our pet scan tommorow and results the week after fingers crossed it will show tarceva working and his akes and pains are just normal part of old age (even though he is only 49!) bless him.

Take care
Sharon x

[dtay]

Hi Sharon - sorry to hear that things arent doing so well at the minute. My Dad had a big weight loss too, and the skin hangs from his arms and chest where his muscles used to be. He aches around the rib area, the Doctor gave him high dosage soluble paracetamol and that does the trick for him at the minute. His Doctor gave him some really good protein/vitamin drinks and they came in fruit flavours which he manages to take. Mention these issues to your Doctor when you see him. Vitamins and supplements are a funny thing when you are taking Cancer meds, some Oncs say no and others say yes - my Dad takes a general multi-vit and has just started taking Pomegranate supplements. I will see what I can find out for you and if there are any that you shouldnt take.
Hope things improve soon.
Dawn x

[dtay]

Sharon - have looked at Jimmy's diary and he takes the following supplements :

Shiitake capsules, Vitamin B, Vitamin B complex,Vitamin C, Milk Thistle, Sillenium and Pomegranate extract.

[phillipa]

Sharon, I am so sorry to hear that Martyn is not feeling so well this week. I do hope the PET scan shows that the Tarceva is having an effect.

(((((hugs)))))) to both of you

[dtay]

Sharon the only thing I have discovered so far is that grapefruit/grapefruit juice has an adverse reaction when taken with Tarceva, and so does St John's Wort (herbal remedy for depression).
Will keep researching tho !!!
Dawn x

[dtay]

Hi Sharon - how are things, is Martyn any better ?
Dawn

[sharon]

Hello all,
Thank you so much for the wonderful response! Martyns had a very uncomfortable night, all his joints hurt and he feels like he is losing the battle, reasured him its just his emotions and nerves before his scan today.
Went for scan, took bloods, Marts bloods come back not very good, Doctor said to have scan then see him. A lot of his veins have collasped so today the canduler they put in caused a large heomatoma on his hand!!! Nurses put cold packs on, ok now just very bruised. After scan doctor told us Martyn has to stop the Tarceva again! his body can not tollerate it. On one hand we are devasated on the other relief, Mart will be pain free because the tarceva has attacked his muscles. He had no energy today and did not even want the scan today. We get the results next week and we will know whether Marts suffering has been worth it.
Thankyou for advise for suplements etc,
Take care
Sharon x

[phillipa]

Sharon,

We can only hold on the thought that the Tarceva has done it's job for Martyn. it is so hard for you als, because you have to be strong for both of you and it does take it's toll on you. I suppose because we all know what it is like, we can give you comfort and kindness. I am trying to find the right words, without platitudes. Hang in there.

Soft hugs...

[norfolkbirdie]

Hi Sharon

Hope Martyn is feeling a bit better today? Dave also had huge weight loss and it does cause all kinds of problems from aching, shivering cause there is no fat to keep them warm, no energy etc... the best thing that happened to Dave was Steroids, I wasn't a fan but am now! He only takes a low dose daily but he has now gained 1 stone over last 4/5 weeks and that awful prison camp look is going!! He is eating everything in sight and has a craving for fresh fruit. Still taking Tarceva and dealing with skin problems from it but he is looking and feeling so much better. I wonder if these may help Martyn??
Take care
Ros

[dtay]

My Dad felt great when he was taking steroids too. Hope that the scan brings good news for you both.
Love
Dawn

[sharon]

Just an update before i go to bed,
Martyn had a bad night in a lot of pain, this morning he had not got the energy to stand with out help, i called our hospital and explained im worried but Mart just wants to give up and sleep and the sister said bring him in we will check him over and it will make you feel better.
Within ten minutes of being there he was hooked up to oxygen, and a heart monitor! They called out his consultant, did loads of tests chest xrays bloods ECG, said we did the right thing comming in Martyn could not have gone on today. He is staying in and Heart consultant seeing him in the morning, xrays showed shadows around heart and lungs which could be fluid again, last august he had 2ltrs in the sack around heart and 3 ltrs in one lung!
He looked very sleepy tonight but he also had a better colour to his face and his hands, nurse said the oxygen is helping him alot and taking the strain off trying to take deep breaths.

We are due to get scan results on wednesday, but doctor said he will chase them up tommorow. I feel so scared.... and too young to be going through this, Martyn is only 49 and im only 40, we want longer together and we have children our youngest is only 8 this is so unfair. sorry im feeling low right now waffling on again, and poor Marts the poorly one.
Take care
Love Sharon x

[sharon]

The results arrived last night. Martyns cancer has progressed it is back in his lymph nodes spread to his liver and his bones aswell as both his lungs and shadows around the heart and chest area. We are devastated... we thought tarceva was working because of how bad the rash was. I still think its a drug that just does not suit everyone and mart is one of them. We start adifferent chemo tommorow, and hopefully martyn wil be home from hospital the weekend.He tollerated chemo really well last year so fingers crossed XX

Martyn staying positive said let the battle begin!! Bless him.

Take care all
Love Sharon x

[dtay]

Sharon - thinking of you both. I hate this terrible disease and how it affects families.
(((Hugs)))
Dawn

[norfolkbirdie]

Sharon
Sorry to hear it is back but as Martyn says"let the battle begin" and that's what you have to go with! Good luck with chemo again and hope he is well enough to come home this weekend, things are always easier when you are at home together.
I agree with you on Tarceva and it does not appear to suit some people just as other treatments don't, each person's cancer is a unique diease and requires tailored treatment.
Thinking of you all
RosX

[sharon]

Thank you Ros & Dawn,
Chemo went ok wish he could come home after but not getting enough oxygen wen off help so his stats fall so got to stay on 30% just a little help to help take strain off breathing. good news after heart echo they said No cancer in heart or sac around it shadows were from fluid on lungs!***xxx! we have too big up the good new!!!!!
Thankyou again this site makes me feel less lonely it midnight im going to bed with out Mart again! and i feel people out there know what im going through.

Love sharon x

[dtay]

Sharon, my Dad was taken into hospital after his first chemo treatment as his blood levels plummeted so I know how you are feeling. Great that there is no cancer around Martyn's heart though, isn't it !
Thinking of you both
Dawn x

[Deanne Jenkyns]

Hiya sharon,
I have been reading through this thread I have been away and only just seen it. What a awful time you are both having, How is he doing at the moment and how are you Sharon? Thinking of you all.


Deanne
x

[sharon]

Hi Deanne,
Things cant get any worse, Mart came home on friday he was very weak but ok and talking. By saturday night he had suffered a stroke,he cant walk or talk an it breaks my heart.
His doctor phoned and said to bring him in on tuesday 8.30am if i was concerned take him to A & E but i know he would be either left on a trolley or on award and not be with me 24/7. so i am looking after him and i know if they keep him in tommorow its ok because it a bupa hospital and the nurses have time to care.
Cant stop crying just want him to be able to talk to me and tell me how he feels and what he wants. he still smiles and cries its so hurtfull to see.
Kids are heart broken they dont understand why he has gone down hill so fast we knew we were on borrowed time we just thought it was alot longer.

Sharon x

[Deanne Jenkyns]

Dear sharon,
It breaks my heart reading your post. It's so hard to find the words to say to you. I cannot imagine the pain you are all going through right now. It's so bloody unfair all this. It must be so hard for you sweetheart to watch the man you love go through this and equally as hard to see the pain in your childrens faces. I wish I could make everything all right for you all. Sending you all ((((hugs))) You know where we are Sharon, I just wish their was more we could do.


Deanne
xxx

[phillipa]

Sharon,

There is nothing any of us can say, as you go through this. Perhaps knowing that we are all travelling this road with you might give you some comfort at this time. We all know what you are experiencing.

Please do not be unkind to yourself, you are doing everything right for Martyn and he knows this.

Soft hugs

Blessed Be

[norfolkbirdie]

Sharon

Oh no, how cruel this disease is! thinking of you and wishing you all the strength to look after each other.

Ros
X

[sharon]

Thank you for your response,

It really means alot, i dont know you all personally but i feel you all know what im going through.
I feel i cant be strong anymore and cry all the time.... you should see the looks i get when im driving!! thats when i seem to cry the most, you have to feel for the other car drivers they must look and...well i dont what they think but i know if i saw someone crying at the traffic light i would be thinking of them all day and hoping they feel better.
Got up 6 it took all our time to get ready for 8.30am appointment with oncologist, He looked at Martyn who was exhusted just getting out the car into a wheel chair and admitted him streight away, he got bloods done chest xray and CT scan and fliud drip set up all in today!

Martyn still cant talk which is very frustrating for him and i just want him to tell me how he feels, he can say yes and no and he said the words Die which upset me, he knows whats going on around him and today he lifted his parallised arm which shows he can recover what he has lost,and right now sod the lazy arm and leg just give him back his speach.

Thanks again for replys will try and update but with kids half term juggling them and hospital you dont know where the day goes.

Take care Sharon x