New members husband-about to start Tarceva.

[daisey]

We are back! Hi everyone! We managed to have 4 weeks away and it did us both so much good. Actually slept-both of us- all through the night for the first times in ages. So much easier to put the hospital/doctors/cancer on the back burner when not in the country!
Bob was tired but we just pottered and took things gentley when he felt a bit weary. He is still on 150 Tarceva. The skin split problems: we have used a steroid cream on them for 30 mins. then a product called gloves in a bottle. (allergybestbuys.com). This product gives protection for around 4-5 hours so we applied it twice a day. The splits healed and we are continuing to use this without the steroid cream as a maintenance. Still some pain but 3 diclofenac per day, 3 x 2 paracetamol, 2 cocoldamol at night seems to be working well with a 5mg steroid every 3 days. Bobs walked round the markets, drove more days than not and quality of life is pretty good. The rash fluctuates and hiccups can be a problem. We have a scan tomorrow and see the Oncologist on Monday. I can't pretend all the days are good for Bob but more are good than bad and the bad are tolerable. No cough, loss of weight etc. still so we have everything crossed that the Tarceva is working.
love to you all.
Daisey x

[Deanne Jenkyns]

Hi Daisey,
Just wanted to say replied to you on another thread.


Deanne
x

[wendy]

Hi Daisey
Pleased your holiday went so well, it's ice to feel normal isn't it? All the best when you see your onc.
hugs
wendyxx

[daisey]

Thanks Wendy,
hope you're doing well too? We saw the Onc tonight and there is "no change". As the scan was based on one month without Tarceva and 3 with Tarceva we take this lack of progression as a very positive step and we are both delighted! Off to open the champers! Thankyou all for your support!
Love Daisey xx

[daisey]

A weekly update. Little change and still on 150 dose. The bone pain in Bobs ribs has got a little worse and he is to have a short dose of chemo to the affected rib tomorrow. Skin better and all looking pretty good still.
Daisey xx

[daisey]

Above post should read a short dose of radio therapy to the ribs!
An update. Still on 150 per day. The radiotherapy was given to aleviate pain. (secondary bone cancer) It is not effective yet and Bobs not feeling to good. Rash comes and goes. Tolerable. Bad tum but as Bobs on painkillers, Tarceva, steroid etc its hard to know the cause of this and whether or not its a side affect of what drug! We haven't gone away yet as Bob needs to feel better than he is right now in order to travel. Hopefully all this is just a "hiccup" and the radiotherapy will kick in soon. We were told 2-3 weeks for it to become effective and its 2 weeks on Tuesday. Best wishes to everyone.........
love Daisey x

[daisey]

We are ýn sunnier climes (finally) and have found an internet cafe so a quick hullo everyone. Jýmmy....your update makes great reading. All things positive help with this dont they. And well done to you for putting up with rotten sideaffects at times and all the help you two give to others. Bobs still on 150 but its been very up and down. He had a problem walking 100 meters the otherday and the pain in his ribs is still a problem. BUT he is having a good quality of life (as the saying goes) and the bad days are outnumbered by the good ones. Very much so.
Love Daisey

[dtay]

Good to hear from you Daisey - wish I was there with you !!! We are going for a month in August and cant wait !!
xx

[Deanne Jenkyns]

Hi Daisey,
thanks for dropping by, really good to hear from you!


Love
Deanne
xxx

[jljenkyns]

Hi daisey

glad you are both having a great time, Has bob tried oramorph? this is a liquid for of morphine and gets into the system quicker i usually take half a teaspoon if i have any twinges might be worth a try

jimmy xx

[daisey]

Still in the sun! Well Bobs had some 'poor' days and we have found that he cannot do without a car anymore BUT the sun and good fresh diet just make both of us feel better anyway. Thanks for your suggestion re oramorph Jimmy. I will see if Ý can buy that here as the chemists here are very good. The pain is still very much a problem but Bob has bone cancer as well as lung so we dont know how effective the tarceva has been on that cancer. We have a PET scan in July and hope we can stay here as long as possible. Our oncologist has made the next perscription for 100 mg as Bob has extreme fatýgue at times. Does anyone know if we can reduce the dose while still out here by cutting the tablet please? The rash has all but disappeared. The sun seem to have helped with that as Jýmmy found Ý seem to remember. Dtay- how are you? Ýts in the 30s here already! Hope you have a great time. Best wishes to you all.
love Daisey

[jljenkyns]

Hi Daisey

i did reduce the dosage myself by taking only half a tablet i am not really sure if this does become 75mg or just a lower dose of 150mg my thoughts are the latter.

jim

[daisey]

Hi everyone, we are finally back in the uk. I have to say the last 2 weeks away were a struggle. Bob suffered extreme general fatigue, weakness, poor appetite and weightloss. Eventually we became so concerned that he might not be able to travel back to the UK and took the decision to stop the Tarceva for a week. This made a small improvement that was enough for Bob to make the journey back albeit in a wheelchair at both ends but he managed the plane steps unaided. We had a heat wave which didn't help at all either. We have only been home for 2 days but the symptoms are still pretty much the same but not quite so bad. Very small "meals" supplemented by Complan are helping plus the cooler weather. We are hoping to get an appointment with the onc. in the next few days but we are unable to meet a private PET scan in London on Monday because Bobs not well enough to make the journey. A pity but hopefully this can be rebooked. We don't know if these symptoms are the cancers, side affects, something else(!!) or a mixture of all 3! Bobs now on 100mg. Will update when we have more info. Best wishes to all.
Daisey x

[dtay]

thinking of you Daisey - hope Bob picks up very soon. The heat is very oppressive in Turkey especially when there is a heatwave !! We are going for four weeks at the end of July - cant wait !
love
Dawn x

[Deanne Jenkyns]

Hi Daisey,
I am sorry that Bob is going through the mill at the moment I hope that he improves soon. You must be exhausted with all the worry and stress. Glad you eventually made it home ok.


Love
Deanne
xxx

[daisey]

Bobs been taken off the Tarceva till he has had some blood tests and a Ct scan and the results through. He's in hospital for a few days while all this is going on. He's also been given some steroids to help give him a boost as he's not eating still. So its all waiting really. I realised yesterday that he hadn't had a blood test for 9 weeks so I do wonder if Bobs become severely aenemic? I have passed my thoughts on this to his onc (!!) and they are testing for this too now! How wonderfull if it were that simple!! Do hope so. In haste. So tired. Thanks for thinking of us.
Daisey xxx

[jljenkyns]

Hi Daisey

hopefully they will have some answers for you soon, try as impossible as it may seem to get some well earned sleep , i am sure you will feel the benefits i hope so anyway.

jim xx

[daisey]

Jim and Deanne, congratulations on your "anniversary"......well done both of you! Bob is home now. He had a CT scan which showed that both the lung and bone cancers were stable and we were thrilled to bits! The blood test and the CT scan showed some abnormalities re: the liver though so its more waiting for an ultrasound next Tuesday. The onc. is optimistic though. Bob was taken off Tarceva for 10 days and is now back on a reduced dose of 100mg. He has become quite tired again with a dry cough but not to the same degree as before. He is still on steroids and these have improved his appetite. In 2007 we had been to Cambridge for a PET scan at the Spire hospital. This scan facility is now not available. Bob was to ill to make the London hospital appointment and we were told that London was the nearest a facilitys Addenbrooks did not do private PET scans anymore. I finally got through to the correct person yesterday to find that they (Addenbrooks) do indeed do private PET scans there still! Such a shame as we could have driven there easily and we would have all the info we need by now! Our Onc. is a lovely man and I know he'll be upset at this misinformation too. So, more info next week!
Daisey xx

[daisey]

Jim and Deanne, congratulations on your "anniversary"......well done both of you! Bob is home now. He had a CT scan which showed that both the lung and bone cancers were stable and we were thrilled to bits! The blood test and the CT scan showed some abnormalities re: the liver though so its more waiting for an ultrasound next Tuesday. The onc. is optimistic though. Bob was taken off Tarceva for 10 days and is now back on a reduced dose of 100mg. He has become quite tired again with a dry cough but not to the same degree as before. He is still on steroids and these have improved his appetite. In 2007 we had been to Cambridge for a PET scan at the Spire hospital. This scan facility is now not available. Bob was to ill to make the London hospital appointment and we were told that London was the nearest facility for a PET and that Addenbrooks (Cambridge)did not do private PET scans anymore. I finally got through to the correct person yesterday to find that they (Addenbrooks) do indeed do private PET scans there still! Such a shame as we could have driven there easily and we would have all the info we need by now! Our Onc. is a lovely man and I know he'll be upset at this misinformation too. So, more info next week!
Daisey xx

[daisey]

Well ultrasound showed abnormalities to so now we have to have a PET scan anyway on 5th August. A big worry is that we need to be approaching our PCT for funding and cannot do this till we know the results of the scan. We are effectively losing a month here! I have emailed the PCT for their criteria on funding Tarceva but apart from a em back (acknowledgement) I am still waiting. Apparently since 2007 they have funded a variety of "post coded drugs" to 42 patients with Tarceva amongst those. Bobs better on 100mg but still breathless and tired despite his chest being clear!
Daisey xx

[daisey]

Sept. 11th. After a lot of poor communication and a further session back on Tarceva for 6 weeks the decision was made today between Bob and his Oncologist to stop the Tarceva after already having a 4 weeks break from it. The spread (albeit a "slow" one )to his liver is obviously not a good sign and Bobs has a lot of negatives that have made some improvement in the last 3 weeks. His appetite has improved, he has gained 2 lbs and less fatigue. The down side is of course that we now may have an aggressive cancer that will possibly be more aggressive. The general thoughts seem to be that the Tarceva has had some "holding"benefits but the toxicity has built up to a point where decisions have to be made. We are still very glad we have had the chance to take Tarceva. If we had not done so then the thought would be "what if", at least we know we have been able to explore every avenue. Taxotere along with Avastin is now being talked about as a 10% chance of some benefit. If anyone has any experience of this combination I would love to hear from them. We have also "bought" time and we appear to be back to the 6-12th months survival that we were originally given last year. In that time some very small people have grown big enough to give cuddles and bigger ones to go to University so every minute and day counts. Keep up the good work Deanne and Jim! Best wishes.
Love Daisey x

[shazbok]

Hi daisey
Just a very quick reply, I too had to come off Tarceva as it wasn't doing any thing for me except giving me every side effect check out in 'new to this' and My entries in 'Tarceva diaries'
I started on Docetaxol and had 3 cycles and then a scan of which I got results of yesterday- yippee 3 rd time lucky found a treatment that has worked - bit of a bungle made as no base line ct done prior to chemo starting -so bit of guess work needed as 8wk growth time prior to start but results showed v small 'nodules' gone and small scattered tumours in lung reduced, large spread over 2 lobes of right lung slight growth so assumption that had grown in 8wk and reduced as others had! plus the fluid between lung and lining reduced also, still no signs of it any where else! so a very positive result and had cycle 4 today another 2 to go so should be even better ct scan next time.
Just wanted to let you know other drugs for some of us are better than Tarceva so positive thinking and don't give up hope and let Mr depression seep in, I am going to write on the Docetaxol bit Jim has set up when I get a minute just wanted to try and 'help'

Sharon Good luck x x

[daisey]

Thanks Sharon. We saw our Respiratory Consultant today and the xrays are very bad unfortunately. The right lung is 90% non functioning and there is a possible involvement with the heart now as well as the 2 secondaries. In view of this and our conversations over the last few days Bob has decided that he will no longer continue trying treatments but will spend the time enjoying our lovely family. He has been fighting cancer in one form or another for 7 years now, a long time.
My very best wishes to you and to the others on the website. The support and just knowing others are out there fighting the same fight has been a great help. Good luck to you all.
Love
Daisey xx

[phillipa]

Daisey,

My thoughts are with you and Bob. I just don't know what to say.

soft hugs to you both

[jljenkyns]

Hi Daisey

It is a is a big decision , i wish you and your family all the best and do hope you enjoy each other as much as possible. we are always here if you need us in any way.

jim