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Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Juliana » Sat Jun 26, 2010 1:05 pm

Thanks Penny,
I checked up on the foot drop thing, sounds very similar - strange how my oncologist didn't mention it at the appointment - but he did get the scan rechecked incase there is tumor involvement but they couldnt see anything.

I haven't had the prosure yet, I have a meeting with a 'dietician' next week to discuss this further. I have ensure which tastes ok and I drink alongside food (when I remember), but I doubt it makes a great deal of difference. Going back to a normal diet was easy - no issues with reintroducing dairy/meat etc, but still have conflicting advice from people who say dairy and any meat, even fish is a no no for cancer sufferers....most frustrating.

I think the Chemo sensitivity test is offered in some American/Mexican clinics - I know my oncologist wasn't that interested in it when I mentioned it to him, so I guess it's less used in the UK.

Juliana

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby clair2305 » Sat Jun 26, 2010 7:43 pm

Hi Juliana

just a quicky....I see you have foot drop and in answer to other people's replies to you, yes it was Blue that had it. It developed in one leg then the other within about 10 days of each other and got worse. You can look through my posts (or search foot drop) and I wont blurb it all here, but the thoughts were they don't know why they see it, but they do in PC patients. Although I would say Blue is now without foot drop at all now. I looked through my posts and could see that I said in Feb that it was getting better and it continued to and he has no foot drop, doesn't have to wear his splits at all. Not sure if his legs still feel numb (I will ask him).

But I wondered if either the tumour shrinking helped (not pressing on nerves) or the nerve block may have helped (although not with the pain).

Clair

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Juliana » Sun Jun 27, 2010 12:43 am

Hi both,
Thanks for the info.

My duragelsic patches mask the pain really well, I am sure its also masking symptoms in my chest/lungs as I have a vague feeling of something going on....but thats another matter.

As for the leg/foot:
No swelling or redness
DVT - my platelets have been good as in on the low side
I have only noticed it twice - both times I had walked quite alot and my painkillers struggled and had started to wear off
It feels almost like a dead leg, it goes to sleep and I start to limp and have to concentrate on lifting the leg, from the hip down
The only type of pain/ache is possibly behind the knee....like a dull ache I guess

This is all I can remember as at the time my back had also kicked in and so my brain gets torn between paying attention to the two areas.

Its strange how my oncologist has not referred to this as foot drop.....I mean, he should be aware of it as a PC symptom shouldn't he? I may ask my specialist nurse about it.

anyway, time for bed - nn xxx
Juliana

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby clair2305 » Sun Jun 27, 2010 7:52 pm

Juliana

what you decribe does sound like what Blue had and just to give you the brief rundown of it,it started in one leg then the other a week later. This was all prior to diagnosis, the week before he was admitted to hospital after seeing a professional and thorough locum!

Blue described it as feeling similar to you, like he was going to trip up and yes after a while his hips did hurt from the effort to lift his feet. As it happens we were talking about it today, (in-laws were here and there was some special football match on the TV???) and Blue confirmed that he has no numbness in his legs at all now, he did, it seemed to develop, foot drop on one foot, then both, then lower half of his legs felt numb, then the upper parts. I found it upsetting because sometimes I would touch his leg and he couldn't feel it.

As you know he ended up with leg splints, the OT from the hospice came round and supplied them, but then he hasn't worn them since February and albeit slow walks perfectly now (although he does sweat a lot more since having PC - anyone have this)

As for the term foot drop, I think it may have been us that first used this, but like I said in my last post we asked the oncologist and they said they see it but not sure why.

I don't want to worry you, listing the progress of Blue's foot drop, but just keep an eye on it and if you need to, ask for something, eg splints as Blue probably waited over 2 months for these and it was only because the hospice could provide them quicker than the hospital (that appt would have been March 2010) and his hips really ached, but then his did develop quickly.

Now I will read all your posts over the next couple of days to catch up.

Take care
Clair

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Juliana » Wed Jun 30, 2010 10:19 pm

Hi all,
Well, yesterday I had an appointment with a dietician to see if there was any way I could put weight on.

Apparently not. This is because I am now dealing with 'cachexia'. When I read it on the internet, it all made sense - and I can't understand why my oncologist/specialist nurse didn't suggest it earlier. Instead I went for months thinking it was me, my guts not working properly or my diet. Instead it's hormonal/chemical and a result of active disease.
http://www.oncolink.org/resources/artic ... 164&id=828

I then had an appointment with my specialist surgeon....who knows how difficult it is for us to get from one side of the city to the other - arranging for 3 children to be cared for etc....and yet is not there, as he's gone on holiday. He lives 10mins down the road from us, is on my husbands facebook and has my mobile number (and me his) and yet still didn't tell us. There is no reason really for him to see us, we've even joked about it - but we made the effort and with how my health is - it is an 'effort' to do these things.
Instead I meet with someone I don't know and my specialist nurse.
I told them of the new ache I am getting in my chest, and the wheezing I hear now and again. I asked if it could be DVT - but they think not....but then say the MRI only scanned half my lungs. So....I asked 'what do you mean.....just the lower half and nothing of the top...' The MRI doesnt scan that high up apparently.....and 'well, we know you have disease in the lung....how many and how big doesn't really matter....its there...' Spoken by someone who has not 'experienced' cancer for themselves.

I tell them about the cachexia diagnosis and not much is said, as if they knew all along.
I then watch them openly joke about going to weight watchers and the losing fight they have with keeping the weight off.....
Whilst I am trying my best to put weight on, or keep my weight from dropping further.

I left the appointments a broken woman.....exhausted.

And that's what I am guys and gals. Broken and exhausted. The fatigue is cruel, I couldn't move today - I lay on the settee wanting to go to the loo but not being able to get up. I couldn't even make the car journey to the dentist 10mins away as I knew there were steps I would need to climb and I just cant do it. My children have 'race day' tomorrow.....I am going to try my hardest to be there.

No news about Leeds yet....the longer it takes the less inclined I am to put myself through it.

Juliana

taylogrd
Posts: 6
Joined: Thu Feb 11, 2010 9:20 am

Re: Advanced Cancer Patient ----- > Juliana

Postby taylogrd » Thu Jul 01, 2010 1:28 am

Hi Juliana,

What a shambles, it makes you ashamed of the NHS together with our consultants lack of understanding and lack of commitment towards their patients. They have been well rewarded over the last few years and their pay levels are amongst the highest in Europe. With regard success rates in cancer cure and life extension for all cancer types in Europe the UK languishes in 14th place out of 19 countries; no wonder when you read your post. When you also read in your link that 85% of pancreatic cancer patients experiance this condition its incredible it wasn't considered :?:

My hope is that you manage to pick yourself after this set back decide on a course of action and go for it, look carefully at the Leeds offer don't let the failings of others rob you an opportunity for yourself.

I had a meeting with Dr Hembry today and did the chemosensitivity test there and then, it goes to a lab. in Greece and the results are expected back within 5 to 7 days. Dr. Hembry had plenty to offer but without doing the test you seem to be shooting in the dark.
Did Dr Hembry give you the diet outline plan sheet? I was surprised to see meat on there wild or organic I have been avoiding red meat she even recommended organic lamb a taste I've long forgotten. No dairy though soya milk and produce only still not a bad trade off.
Dr. Hembry mentioned the clinic in Stuggart but as you say the web site doesn't give much away but I wouldn't mind going on a trip to see first I lived in Cologne (Koeln) for 5 years and should remember enough German to get by.

If pennyb reads this please may I thank you for your words of support for my last post. Praise from such an experianced Postie (113 caps) is much appreciated bit like "Becks" telling me I had a good first game for England.

I hope I can keep strong enough to persue Dr hembry's ideas as I'm starting to feel more pain around my insides, have no appetite and my energy level is down bit like you describe (hope its not cachexia) having something to aim for will hopefully help buck me up so many thanks for the lead Juliana :idea:

Hoping and wishing for better news from you.

Gordon.

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Juliana » Thu Jul 01, 2010 1:41 pm

Hi Gordon,
So glad to hear you got something out of the appt with Dr Hembry, and good job for getting the chemo sensitivity test done so quickly.
I still havent had mine and am wondering if I have left things too late.

Like with everything, I put it off thinking I have more time, when in reality my body has been telling me otherwise. Today for instance, I am too weak to get dressed/drive and can barely feed myself. How I am going to get to Leeds for this meeting, if there is one, I have no idea. I am a wreck.
I have put my order in for prosure, but I am worried my body has gone beyond the point of rescue.

My palliative care team organised a gp to come and see me and discuss/prescribe anti-depressents.....she came today.

Just too tired to type x

J

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Juliana » Thu Jul 01, 2010 11:09 pm

I meant to say - about the diet plan, yes - I had one, but mine contained dairy - because of the calorie factor mostly as I need calories desperately but not from sugary products. It also contained meat, organic ofc - and it was Dr Hembry who advised me on the pro-sure....it's the high dose of Omega 3 that is one of the important factors in trying to increase your weight gain.

I've asked my Mum to come and stay with me for a while, help cook for me as I am just too tired - basically look after me. She comes up a lot during the week anyway and helps with the ironing and washing of floors etc, but being alone today made me realise I just can't do it by myself anymore - I need nursing and to be cared for.....and who else better qualified than my own Mum.

I'd be interested to hear what you decide about the German clinic Gordon....especially if you know the language and country, you are far better equipped to know whether they are pulling a fast one or not.
I think I would like to do the chemo test, but don't think I can make it to Bristol - so will email her office and see if I can get a blood sample taken by my district nurse and sent up to them or something.

I checked with my specialist nurse today about Leeds, apparently she had chased them up today and was supposed to be called back, but nothing so far. I also asked if they had considered the 'cachexia' a while back during their weekly review of my case (when the barium had been done etc) and she said they had agreed the cancer was causing the weight loss....but they didn't use the 'cachexia' term as such....hence why it wasn't high-lighted at my appointment.
You are right, it's a shambles.....but then again - it always has been when it comes to my journey - when I look back over it all....it just feels like something written for a soap-opera.....not a real person.

They have never had a pro-active approach.....I just don't understand it. Even with prostate cancer they take several needle biopsies because they know the cancer cells could be easily missed....yet on my tumor, which was the size of a grapefruit they take 1 needle biopsy and are satisfied. Gemma's mum is totally right.....start with ruling out the worst and work your way down, especially when the patient is young, or if it's 'unusual' for this to happen etc etc. It could save time, money and dare we say it.....lives.

Juliana

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Nardobd » Sun Jul 04, 2010 12:15 pm

Juliana, I'm so pleased that your Mum is helping you - after all it doesn't matter how old we are, when the chips are down we want our Mum. In one of the articles I read about cachexia it said that resistance exercise training may help - something to discuss with the medical team?

I agree about biopsies - Ted still hasn't actually had a positive biopsy, although we all know that he has pc. They simply weren't prepared to do a second procedure. The fact that they don't take more than one sample must hinder the care of patients.

We've been very lucky with our consultant who does actually communicate and even takes pro-active measures where necessary, such as calling Ted back to clinic when his tumour markers doubled recently. I guess it's all down to the individual consultant and, perhaps, whether they have been on one of these courses which Penny mentioned.

Sending love and fattening thoughts your way!

Nicki xx

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby clair2305 » Sun Jul 04, 2010 2:47 pm

Juliana

I hope you are feeling a little better today. The behaviour of those people is atrocious, I'm not surprised to hear you left there a broken woman. Maybe you or one of your family need to say something about their insenstive remarks.

I'm also surprised they haven't mentioned cachexia before. It was one of the first things they were worried about with Blue because of his dramatic weight loss and the dietician at the hospital is great. Blue is weighed every appointment and they keep an eye on it. And even though his weight is ok at the moment, the dietician will alway touch base with us when she sees us at the hospital.

I think Addenbrookes (where Blue goes) is quite on the ball with cachexia, maybe you could even contact them. The PC lead is Dr Pippa Corrie.

Also, I saw a cachexia trial
http://www.cancerhelp.org.uk/trials/a-t ... setValue=4

I still have to catch up on your posts and will do so and have a proper 'catch up' with you.

Loadsa love n hugs

Clair

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Juliana » Sun Jul 04, 2010 10:06 pm

Hi Clair,
thanks for the info.

Considering Swansea is rated quite high in the treatment of Pancreatic Cancer....to think, it's been 2 yrs and 4 months since my Whipples Op and only now they have put a dietician on my case. Not only that, they have watched me lose all my weight over the past 4 months....and not once suggested it may be cachexia (not to my face anyway) - and I was so wrapped up thinking it was my guts/stomach not functioning properly that I didn't think of any other reason.

I just feel so let down. Yet they think they have done everything to help me survive....but if they were to see it from this side of the table, I wonder if they would be as confident in their service to me.

I am now left so weak, a trip to the loo is an effort - trying to embark on a regime of pro-sure, something I've had to ask for.....unbelievable.

Juliana

jordan
Posts: 6
Joined: Sat Jun 12, 2010 10:53 am

Re: Advanced Cancer Patient ----- > Juliana

Postby jordan » Mon Jul 05, 2010 4:56 pm

Hi juliana
I live in carmarthenshire (not far from swansea) We also had a similar experience as you, when my mum was ill last year we had to push and ask for everything we needed for my mam including appointments to find out what was going on!After joining this site i have learnt so much from you all, I wish i would have known when mam was here to try to help her more.
Sending you hugs and strength
jordan x x x

taylogrd
Posts: 6
Joined: Thu Feb 11, 2010 9:20 am

Re: Advanced Cancer Patient ----- > Juliana

Postby taylogrd » Wed Jul 07, 2010 12:55 am

Hi Juliana,

I've been reading your posts and am so sorry that you are still finding it hard to maintain your weight and strength although I see you remain an inspiration as you still are able to find time to write with support and encouragement for others. You can see by the number of replies and readers you get that your voice and opinion is not only valued by me but many others as well. I hope that our collective good will thoughts and wishes send you strength and renewed resolve to face life in crap cancer world.

You mentioned you were interested in the chemosensitivity test Dr. Hembry told me that she had a contact at our hospital they did the the test at our unit and sent it direct to Greece (give Dr. Hembry a ring). The test advises on the best chemo. as well as suitable alternative treatments which would be helpful for you as they are still willing to offer you chemo.; believe they claim a 70% success rate for the test results.I paid 1300Euros plus a £25 phlebotomy fee and I'll keep you informed on what happens with me. I'm not to sure about the German stuff though seems a bit cutting edge, only recently tested on mice, who would treat any side effects that might develop? Although that trial order might considered by some as OK first mice then men, rats, monkeys and ladies last? Or was it ladies first? OOH I'm making meself nervous now.

I know what you mean by the quality of care our local Hospital gives now. I phoned the hospital last week with breathing problems/suspect chest infection and loss of appetite they told me to go and see my GP!
Good job I persisted with the receptionist and eventually got to see a standin Dr. who gave me a thorough examination she even pulled up my trousers to measure my legs, harrassment sprung to mind but not for long. The Doc perscribed anti-biotics for the chest infection, Nystatin and corsodyl for the mouth and throat infection and placed my record on the 24hr help line to aid speedy service next time. I'm feeling fine now and eating better as well.

Thoughts, hopes and prayers that things start to go better for you.
Gordon.

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby clair2305 » Mon Jul 12, 2010 2:20 pm

Hi Juliana

how are you? I did type a nice informative message to you about cachexia and my internet crashed, so I will start again and before I do I'm not trying to teach you to suck eggsand I know not everyone is the same.

But, Blue lost about 4 stone and was put on steroids (4mg dexamethasone daily), these were gradually reduced over a 4 month period and in that time he had put back on almost 4 stone. He also had Calogen extra and Fortisip drinks.

He took part in research (only involvement was taking blood) at Addenbrookes where they are looking at cancer and weight lostt (cachexia). The doctor conducting this research was Dr Tobias Janowitz and I suspect he probably has some results now.

Also, as I already said, Blue's dietician is great and she gave us the following information leaflets which did help as it happens, sometimes a little of the right food is better than lots of food and I think it also taught me sometimes the little things help, like real butter and snack size Twix.

http://www.cuh.org.uk/resources/pdf/pat ... y_food.pdf

http://www.cuh.org.uk/resources/pdf/pat ... t_loss.pdf

Catch up again soon but gotta take Blue to see palliative care doctor again today.

Love
Clair

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Juliana » Wed Jul 14, 2010 10:18 am

Hi Clair,
Thanks for the info.

Apart from recently, the only contact with a dietician throughout my cancer battle was at the hospital just after my op. Where she advised me to eat as much junk food as I could to put my weight back on quickly.
That was the only advice I was ever given. After my op, I did put the weight back on, but my weight loss was not due to the cancer as such, it was due to my pancreas not making the digestive enzymes, so once that was sorted with Creon the weight returned and I went back to normal.

This cachexia is a totally different situation.
The depression associated with it is crippling. I have been prescribed anti-d's, but only 10mg a day - not sure whether I should ask for more as it's only been a week on them. I am also acutely aware of how scared I am with regards taking on the trial. I havent been to the meeting yet, but my imagination is running wild, and I fear I will fall at the first hurdle. I tried to explain to my hubby lastnight how I felt....frightend, cowardly and desperately sad. Being in the house fills me with sadness, I am surrounded by all I have strived for - yet no longer feel part of it, or able to enjoy it. I love my children so much, yet get agitated and stressed when they are around me. And my poor hubby.....totally neglected, I just can't show him how much I love him....and I want to be left alone.
Everyone tells me how I should 'enjoy the time you have left'.....but it seems a contradiction of terms.
I so want to live, but I fear that I just can't deal with what is required to get there (needles/prodding/illness etc)....which then makes me feel like a coward and that I obviously don't want to live as much as I think I do.

It's a vicious circle.

Juliana