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Post by phillipa on Jun 22, 2007 15:53:47 GMT 1
I am considering transferring out of Cambridge. We were seen bt David Gilligan. he is arrogant and does not listen, supposed to be the BEST down here. At presently kent is being cared by Dr Hugo Ford, a more approachable type of fellow and willing to listen. He has agreed to send Kents scans up to Cookridge for David Bottomley to review. They checked the laser knife is no where to be found at the moment. If I haven't heard anything by the end of next week I am to ring again. Great..if I hadn't rung I wouldn't have found this out. So I asked when does Dr Fortd want to see Kent again and was told he expects to see him after the laser treatment, but if there is a delay with this, he wants to see him sooner.
We are seeing Hugo Ford at Papworth and Kent had the PET scan done at BUPA Lea Cambridge.
Is squamous cell tumour a soft tissue tumour? If it is like 'tapioca' and can't be frozen, what is it?
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Post by dtay on Jun 22, 2007 18:52:40 GMT 1
Phillipa I think a squamous cell tumour is a solid mass - couldnt swear to it tho'. Thats what my Dad has. Don't you feel as if you are banging your head against a brick wall sometimes - it makes you so frustrated. We do seem to be at the bottom of the heap when it comes to new drugs and treatments - makes me wonder what happens to all the money we pay into the system !! x
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Post by phillipa on Jul 4, 2007 12:13:48 GMT 1
The Laser Knife has arrived at Papworth. Obi has his appointment for treatment on Thursday 12 July. After the last week, this has come as the best news yet. No guarantees that it will work.
We are still waiting to hear from Cookridge regarding the second opinion and treatment options
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Post by norfolkbirdie on Jul 4, 2007 12:54:41 GMT 1
Great news Phillipa. Good luck and crossed everything that it works and helps Kent. Seems Cookridge may be an option if we do Brachytherapy as it's only available there and in London.
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Post by dtay on Jul 12, 2007 22:22:43 GMT 1
Hi Phillipa was wondering how things went today with the Laser Knife treatment.Hope Kent is doing ok. Love Dawn x
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Post by Deanne Jenkyns on Jul 13, 2007 13:06:07 GMT 1
Hiya Phillipa, Hope all went well, been thinking of you both.
Deanne x
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Post by phillipa on Jul 13, 2007 14:08:52 GMT 1
Oh boy what a week, sorry to have been absent. Kent had not been well all week so Yesterday looked doubtful, but our wonderful GP cut back on his morphine and the rest and remarkable improvement. I have hurt my left hand so limited time on computer arrrgghhhh.
yesterday went really well. they got 3/4 of the tumour and are going to get the rest in two weeks. Kent is really sick today, I think though it is after effects of the anaesthetic. Planned to head to Shropshire for this weekend, and wouldn't you know it, best laid plans of mice and men.
The coughing seems to have lessened and the breathlessness has has easaed, so i think the lung is re-inflating. I have him sitting up munching on curly cajun fires. I know not exactlty the best, but if he up chucks he will get the rest of the anaesthetic out of his system.. method in my madness...
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Post by Deanne Jenkyns on Jul 13, 2007 17:08:00 GMT 1
Phillipa, That is fantastic news! Im thrilled! You always manage to make me laught with you witty posts! Cajun Curly fries should deffo do the trick lol!
Deanne xxx
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Post by jljenkyns on Jul 13, 2007 17:09:29 GMT 1
Hi Philippa
Excellent news for you both , Onward and upwards to get the rest of it . I think you are right it will probably be the anaesthetic. Lmao at the curly cajun fries enough to make anyone chuck!!!lol Tell Kent we are all rooting for him
jimmy
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Post by dtay on Jul 13, 2007 17:14:06 GMT 1
Delighted things went so well x
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Post by Deanne Jenkyns on Jul 15, 2007 22:43:54 GMT 1
Hiya Phillipa. How is Kent doing today. Hope he is doing well and that you are ok too (((hugs)))
Deanne xxx
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Post by phillipa on Jul 16, 2007 19:47:45 GMT 1
We went away for the weekend for the first time since getting on this rollercoaster ride and Kent thrived. Hardly any cough and no breathlessness. I am not to sure whether to laugh or cry at this result. His colour is better and his appetite is returning. Morphine is back to 5mls 3 times a day. Roll on next Thursday when they attempt to get the rest of the tumour they can and then the lower odse chemo. for the remainder of the tumour attached to the oesophageal mucosa. Still waiting for the opinion form David Bottomley. You just never know, maybe not a cure, but a chance to nuy more time
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Post by Deanne Jenkyns on Jul 16, 2007 20:27:48 GMT 1
Hi Phillipa, It really is fantastic to read such good positive news! I am so delighted for you both! I got goose bumps when I read your post. So pleased you enjoyed your weekend. so proud of you both. Goodluck for the next lot of treatment.
Take care Deanne xxx
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Post by jljenkyns on Jul 16, 2007 21:06:02 GMT 1
Hi philippa
As deanne says great positives and gret to hear you both had a great weekend! Just what the doctor orderd so to speak. The very best of luck for next week.
jim
xx
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Post by dtay on Jul 16, 2007 21:26:06 GMT 1
Yes, I am delighted at your great news Phillipa, - here's to more of the same next week ! Dawn xx
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Post by phillipa on Jul 17, 2007 12:56:31 GMT 1
Letter arrived from Cookridge.
I am quoting it verbatim
Dr Ford has kindly sent your CT scans and a summary of your treatment so far. Myself and my lung cancer cooleague, Dr Snee have reviewed this and we do feel that the very best treatment for you would be radiotherapy. We feel that this would be much suoerior to the other treatments that you are considering. the radiotherapy effects can be enhanced by having chemotherapy in addition but the most imprtant part of treatment would be radiotherapy.
As the tumour is relatively small there would be a chance that the radiotherapy treatment could eradicate the tumour completely, however, there are risks associated with radiotherapy and you would be expected to have soreness in the gullet during the treatment and for a few eeks after and if you are unlucky you might have more prolonged discomfort in the gullet. i fear that if you do not have treatment you will get additional problems because of the tumour growing and this will cause problems swallowing and also increase the risk of infections.
I tried to speak to you by telephone and left a message on your answer phone but in case you did not get the message I have put my thoughts in writing to you.
If you wish to discuss this further with me please do not hesitate to give me a ring.
I wish you all the best with your treatment in the future
Signed Dr David Bottomley, Consultant in Clinical Oncology.
Of course David doesn't know about the success of last week. I am sure after the chemo Kent will review his options. If the chemo kills the remainder of the tumour off as is hoped, fine. if not, Kent might consider the radiotherapy, but he does NOT TRUST the doctors who would be carrying out the treatment down here, and travelling or even camping out up at Cookridge for seven weeks is not a financial option we can consider, so we are between a rock and a hard place.
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Post by Deanne Jenkyns on Jul 17, 2007 17:26:00 GMT 1
God Phillipa! How bloody annoying! outrageous!
Deanne x
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Post by norfolkbirdie on Jul 17, 2007 22:58:04 GMT 1
Hi Phillipa
Sounds like you have gained enormously from the treatment and hopefully more to come after next one. Great news. What kind of radiotherapy are they talking about for Kent? I Have read about a kind that can be given intensively for a couple of weeks and has the same effect as longer term course, if this was possible then it may solve your prob re travelling to Cookridge. Maybe worth asking also if they have accommodation there, some hospitals have places for you to stay if you travel from far away. I bet it feels good to have some choices back again?? Take care Ros
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Post by phillipa on Jul 18, 2007 17:53:24 GMT 1
I doubt that Kent will even consider radiotherapy and the inherent risks, the worst being spinal chord damage and of course damage to his oesophagus. Now if they said they would consider brachytherapy, rather than external beam radiation, he might consider it, but again it would be hard to implant the seeds in this area. He has the next round with the laser knife next Thursday and if the improvement is better than last week's outcome, he will be happy. it's great to have these options. We knew they were out there just getting someone brave enough to consider them has helped us enormously. I still think Tarceva would be great as a first line, in cases like this, rather than the bog standard treatment they dish out. Would NICE ever have the guts to consider the long term picture? Which PCT would be brave enough to run with it?
Our finances are such, there is no way we could afford Kent to stay up North while I was down here. I think they only do the other type of ERBT treatment down London way. It's the distance he would have to travel daily. There is no way i can drive those distances, after that accident we had several years ago. I'm a wreck if we venture onto the A14 or M1. kent having to drive alone is worrying enough, this is why we are going to have think laterally regarding the chemo treatment as he will have to travel to ASddenbrookes for this. there is the hospital transport, but they wont take me and with his deafness this is going to cause a couple of problems. he cannot understand what people say nless they are standing directly in front of him. I am his translator when we go to the hospital as he is getting worse.
Oh yes having choices again is great feeling
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Post by jljenkyns on Jul 18, 2007 18:40:11 GMT 1
Hi Philippa
I can quite underestand why kent would not consider radiotherapy considering the risks. Hopefeully the laser knife will do the trick. As for the Tarceva the Bloody PCT is pathetic ours are anyway. We have just found out today that Tarceva v Docetaxol difference in price ( NIL) that was a surprise to us we though it was £42 per week keep on their backs as i know you will why should you or anybody have to travel ouside of there own constituency to recieve lifesaving tretament. You are both certainly under the cosh but do not let them wear you down!!
jimmy x
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Post by phillipa on Jul 26, 2007 8:39:37 GMT 1
Setting off across the floodwaters to Papworth, in couple of hours. Kent has another date with the bronchoscopists to see if they can remove the remainder of the tumour they can get at. 1.30pm is his time. If all goes well we will be home around 6pm.
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Post by norfolkbirdie on Jul 26, 2007 9:03:31 GMT 1
Hi Phillipa Hope all goes well today. I will email you some appropiate footwear.
Ros
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Post by phillipa on Jul 26, 2007 21:01:40 GMT 1
Back home. Kent is dozing. What a success. Saw the photographs from the first bronchoscopy in April and today's result. What a difference. They have reduced the tumour by 3/4 with the laser knife and cryotherapy and in four weeks they want ot check that it hasn't grown and mop the bits left. The airways are unblocked at last. It has been suggested that kent commences the chemo during this time, so we have spoken to Georgina and she will get the kidney scan ordered. kent has wisely listened to Helen the SPR, and is taking next week off work. She said they gave him a thorough going over today and he needs the time to recuperate. Now if the lower dose chemo shrinks the rest of the tumour on the pesphageal mucosa, we might be in with a chance. Kent has lost another 2 kilos in two weeks, then ago I have shed 1 kilo in the same time.
Dr Hunter and Dr Sivaran are so pleased with themselves about this. Noys and their new toys. It went better than what they planned.
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Post by dtay on Jul 26, 2007 21:21:36 GMT 1
Phillipa I am so delighted at the good news. Have been thinking of you today. Dawn x
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Post by norfolkbirdie on Jul 27, 2007 8:45:54 GMT 1
Great news Phillipa, you must be so pleased with this!! Docs should give themselves a pat when things go well like this. Hope he continues to feel better and has a great week to recover. Ros
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