update please....hows everyone doing?

[Deanne Jenkyns]

Hi All,
Just trying to catch up and see how everyone is doing so I thought I would add this thread so people can post in one place on how things are and how they are doing. Hope everyone is doing OK or as well as they possibly can be in the circumstances.


Deanne
xxx

[duane]

Hi All,
Just a quick update on Ange, we went to the Christie on Friday to be told Tarceva still working & x-ray remains stable, make another appointment in 8 weeks ;D. Her rash has all but disappeared, she mostly uses E45 these days but did have a course of antibiotics for a toe injury a few weeks ago which we think helped with the rash. Ange did ask the dreaded question, is there anything for after Tarceva stops working, the answer was probably Alimta, has anyone any experience of this? On her birthday we went to Rome for the weekend. We never used public transport once, just walked everywhere with me telling Ange to slow down as I couldn't keep pace in the heat, as I've said before, she struggled to get upstairs sometimes on chemo.

Best Wishes to All
Take Care
Duane
xx

[jljenkyns]

Hi Duane

Great to hear ange is still doing well on Tarceva and she is still stable , i think with the rash i do believe eventually the body copes with it a lot better, although i still use moisturiser and definitely take the doxecycline daily. , As for the Alimta yes i think that is the next course of treatment for me also but hopefully for all of us that is a long way off,i am due to see the onc next month so i will update then

jim

[rosina]

Hi Deanne, Jim and Duane, It's great that Jim and Ange are doing so well on Tarceva, I just pray to godness that I will too. I have my next scan on 4th July and get the results on 8th July.......... so fingers crossed please! God it's all so nerve racking isn't it. Duane how long has your wife been on Tarceva? I hope that things carry on going great for ange and of course you Jim.

Love rosina x

[rosina]

ps what does Karma mean on this website? is it as in good Karma and bad Karma or no Karma? I'm probably being thick! ah but no change there.........

Rosina x x

[duane]

Hi Rosina,
Ange started Tarceva last September, we saw an improvement in her breathing and general stamina within 4 days, the rash was her only side effect but it was terrible. Her first scan showed a "significant reduction" in the onc's words she was then stable until January when the x-ray showed another slight improvement, since then it has remained stable. The rash has now all but gone and she is living a near normal life including going to the gym & working part-time has she did before. All the best for the 4th July, we know how nerve racking it is but as you say fingers crossed.
Take Care
Duane
xxx

[Deanne Jenkyns]

Rosina,
I hope so much that your scan brings you good news will be keeping everything crossed for you. Karma is just a feature on the boards, not really paid much attention to it to be honest. Will be looking out for your update.

Duane,
How fantastic to read about Ange, reading your post brings a huge smile to my face, it's so nice to read about others doing so well on Tarceva, long may it continue!

Love
Deanne
xxx

[duane]

Hi All,
Ange has just read my last postings and has pointed out the rash wasn't her only side effect - she lost a lot of hair too, this has now started to grow back thicker & curly it was always very straight before.
Take Care
Duane & Ange
xx

[rosina]

aww thanks to you both for your replies! will keep you posted.

Love Rosina x x

[shazbok]

Hi sharon here
As you know it was decided that Tarceva wasn't working for me even though I did have very severe side effects which got worse once I stopped taking it! My ski became all yellow and white heads again, my skin was flaking off at an alarming rate no matter how much moisturisr I applied and my hair has been coming out in handfulls i now have male pattern baldness this has now stopped when I asked onc said had never heard of losing hair as a side effect of Tarceva was intereste to hear ange say she has suffered hair loss.
I have my date now to start chemo - docetaxol 10th July lets hope that it's 3rd time lucky for a positive result

Hoping everyone feeling best they can and chin up

Love Sharon x xx

[duane]

Hi Sharon,
hope all went well with the chemo yesterday, we we're thinking of you. Ange was wondering if your hair has started to grow back & if so is it the same as before. Her hair has grown back thicker, wavy & her eye lashes are really long too so she has to cut them. Ange thought she was the only one to have had hair loss as we had never read of anyone else experiencing it.
Take Care
Duane
xx

[duane]

Hi All,
Back to the Christie today for a review, I'm pleased to say there is no change in Ange's x-rays & she has been given another 2 months Tarceva. As her onc is on holiday Ange saw a new Dr she has never seen before, he remarked about the improvement from the 1st x-ray last Sept to todays. Smiling faces all round
Take Care
Duane
xx

[jljenkyns]

Hi Duane

great news for both you and ange i can imagine the smiles its exactly how we felt when i had my 1st x-ray and it shrank, long may it continue

jim

[Deanne Jenkyns]

;D ;D ;D ;D ;D ;D Fantastic Duane! Really good news!




Deanne
x

[phillipa]

Don't faint, I am posting. Have had a very mixed year so far, but getting my act together again.

Had visitors from overseas, had a total hip replacement and Obi with his ongoing treatments. This is where we tune in again. The tumour which originally inoperable has gone. 21 Bronchoscopies with cry nd diathermay after the chemo and radiation killed it off.

Long story cut short. About one week after my hip replacement, Kent started to feel ill, losing weight and really not well. he was turning yellow and omcplaining of sever pain in his abdomen and leg, but the leg was ruled out as being anything significant, his abdo pain, well that is from the radiation treatment, here's some lanzoprole. No improvement, thing got really worse. I am unable to drive, on crutches and having the nurses in every day to help me. Papworth wants to see Kent urgently, well that's fine,m but neithr of us are well enough to attend or drive that far. kent ends up being admitted to local hospital to be discharged one day later, more yellow than when admitted. This has lead to a formal complaint. he was re-admitted four days later as urgent surgical case. They decide they had better start litening to me and did a CT scan and ultrasound. Oops we have boo booed big time, blocked bile ducts and sever jaundice and what's this on is pancreas. While all this happening I finally get hold of Hugo Ford and he tells why they need to see Obi urgently, those two spots on the other lobe have become significant are now nodules. Obi gets sent up to Peterborough to have the bile duct stented and things move from there. he's been in hospital now eight days, so I get him discharged last WQednesday and we head over to Papworth to see Professor Eisen. Dr Ford apprises him of Obi's condition. They have now pescribed Tarceva for him and the lump in the leg? Mets, but that is being zapped on Monday at Addenbrookes and he commences his Tarceva the same day.

Slowly his appetite is returning, he is on MST 45mg twice a day and Fentanol for the leg pain and nearly normal colour.

When the Tarceva was mentioned, Roche and the PCT have come to an agreement, but it has to be prescribed from Addenbrookes and not Papworth. Big day for Obi on Monday and we will speanding the whole day down there, blood work, ct of the leg, radiation planning and then treatment.

Now as we know that this has spread, no-one is mentioning time or distance for Obi, but it was commented hs already re-written the medical text books as to survival from when he was originally diagnosed.

I have been in touch with Chris Woollams and Obi has started back on EPA, VitaminD3, Vitamin C and Astralagus. it's amazing just with these supplements how he has rallied. Oh he still working full time, thank goodness he has so much sick leave,

So that's it in a nutshell. I am still hobbling but getting around after feeling so bad with the Osteo arthritis, but at least the hip is not causing problems I do have to have my right elbow replaced, but I will wait until we find out how the Tarceva adventure pans out.

[jljenkyns]

wow philippa

the resilience of the both of you never ceases to amaze me, you have been to hell and back and still you both battle on.What an inspiration you show to anyone going through cancer treatment. It just goes to show that they cannot define any time limits? They treat everyone as a standard case but they forget everyone is unique and fights disease in different ways also strength of mind is a great drug. i guess the text books have been rewritten and good for the both of you. hopefully kent will start to feel better soon once the tarceva gets into the system . keep us posted

jim x

[dtay]

Hi Phillipa,
OMG - what an absolutely amazing couple you both are, I have been wondering how you were doing ! As Jim says you are both inspirations on this site, and your strength of character and spirit is outstanding.
Hugs to you both
Dawn x

[phillipa]

Jimmy J, I must add my congratulations on your one year anniversary. Goes to show they don't know it all. As you say, state of mind has a lot to do with it.

Tomorrow is the big day for Obi One Bung Lung. We are both now wondering if we can hold it together. I want him on the plane to Sydney for Blen and Julie's wedding next May, with a possible side trip to the MD Anderson Centre in Texas on the way home.

The Astralagus Obi is taking is given at MD Anderson as a matter of course by IV for patients with pancreatic and breast cancer. He is taking in drop form. Apparently it helps set the body for radiotherapy.

[jljenkyns]

Phillipa

no they dont know it all as we know all to well?

I am sure you will both hold things together no problem we wish you the best of luck ,I am sure luck will with you both and you will get to the wedding and to drop into the Anderson centre by the way what will you be getting there are you going to buy Astralagus as i am not sure how to read this?

jim

[phillipa]

No Thught I would make myself known at MD Anderson seeing they have been invaluable regarding information. (Astralagus can be bought through Chris Woollams here in England
http://www.canceractive.com.) This is where we wanted to get Kent treated if they had not been willing to do it our way here in England, the other hosptal of choice would have been Scott & White in Temple Texas. MD anderson is in Houston Texas.

[duane]

Hi all,
Review day at the Christie yesterday, no change again & another two months Tarceva ;D. Going a fund raising ball tonight & we can't wait to celebrate & dance the night away. Hope Deanne & Jimmy have had a great holiday. Love to all.
Take Care
Duane & Ange
xx

[thistle]

Hello, its thistle here on behalf of Samson, I am his wife, guess that could make me Delilah? Anyway just to let you know he started his tarceva on wednesday morning. It has made him extremely tired and he is complaining of many aches and pains and nausea , however the rash has not started. We were told by the oncologist that the more severe the side affects the better but not to worry if there are none
He has terrible pain in his back, thighs and hips although he did slip out unoticed for a walk yesterday and did exercise with his punch bag, chest expanders and bullworker. His appetite is awful. He has been in bed since 7pm but his cough and breathing not as bad as last night as we were up all night. He has had quite a bit of oramorph though. Hope we can get to church for communion tomorrow. Thinking of you all and especially duane going out with his wife to a ball dancing

Keep Samson in your prayers for me as I pray for you all on the site and your families. Lots of love, Kimxx

[dsharpy]

HiThistle
Thought I would give quick response my dad has been on tarceva now for 2 months he dai not start getting a rash until about week 3/4 which at first made me think it was not working but then he got the rash although managable I have seen an improvement in him on a whole although he still on high amount of pain killers but he is getting about more and sems more positive we find out the results next month so hope all is well he has up and down days but we stay positive as should you both
Donna

[thistle]

hi there Donna,

Thanks for the information about your hubbie on Tarceva. Paul and I got to church today but he was really exhausted and in pain all over. He is always very reluctant to take oramorph as he gets very bad constipation and prefers to have pain

Anyway he woke up today and had a big yellow head above his lip which he proceeded to squeeze as he said it looked revolting, its now left a big red mark, hope it will not scar. His head is very itchy but I have some scalp treatment from the hairdressers which may soothe it. He is determined to keep on the drug no matter what as we had an 18 month batttle to get it. We see the oncologist again on the 23rd of the month when I would think she would assess his side effects and perhaps take more blood then in early december he will get a scan which will let us know what has been happening inside his body followed by a review by the clinician. He seems to be feeling sick and very tired so am just letting him be as everything is an effort at the moment. You hang in there too, Donna, really good to hear from you and everyone else on the site. God bless, Kimx

[thistle]

Hi Donna,

Its thistle aka Kim, just read my post to you and realised its your dad who is on tarceva and not your husband - my apologies. He has got better as the day has gone on but still exhausted and pain getting out of a chair.
We went to church which was good but he was in pain in the hard pews with little leg room for him to stretch out plus he was freezing cold in there. Anyway hope your dad is feeling o.k. today and that this week ahead is a good one. Love Kimxx