[mhnevillParticipant]

Dear Debs

So frustrated for you about the cancellation. I sometimes wonder if they realise what it does to get a letter like that.

Hope the Tens machine does some good.

Love

Mavis x

[brochoParticipant]

Hi Debs I really feel for you what an wawful thing to do to you! I would let them know how it feels when you next see them then perhaps they will take patients needs into account Hang in there Debs love Bridget x

[GillParticipant]

Bl***dy NHS

Don't get me wrong I am very grateful that we have it but how frustrating it is at times. Stephen is still covered by our private health care. For how long we have no idea. We get copies of the invoices so have some idea of just what the treatment costs.

Stephen gets no different treatment than anyone else but it is always on time and he is always examined by the head consultant.

He feels guilty that we still pay so much every month for it but I am so pleased that we have it and would gladly give up other things to continue with it. (in fact one or two things have gone since retiring and having to stretch the money)

I am a firm believer in the NHS and don't begrudge a penny that I put in, but I do think we are all undercharged and should part with more of our hard earned cash to prop it up. (You should see some of the invoices we get. The cost of treatment for mm is unbelievable eg tens of thousands for SCT treatment in Kings College)

I have an idea that people with things like mm in other countries have to give up on treatment because of lack of funds. A point that nobody here will get to because of the NHS.

Me and dates again When did the NHS start. About 1949???

[TinaParticipant]

Hi debs,

I have sent you a private message

T

[DaiCroParticipant]

Hi Debs,

I retract my earlier claim about having exactly the same problems as you. I certainly have bad PN… which has definitely got worse since I started Velcade, especially in my hands. My hands caused me the most distress as I am a guitarist and playing the guitar for pleasure and for songwriting… with its commercial aspects but… since my dose was lowered – Cycle 3 and then again – Cycle's 4, 5 & 6 (same for all 3) it has eased slightly in my hands… but no discernible change in my feet. 🙁

Given all that I do have pain, worse at night but not to the degree of pain as you describe. I am currently on 600mg of Gabapentin but I have been told by my consultant that I can up it back to 900mg if I wish… I think I wish and will start tomorrow.

I asked a Doctor at the Day-Clinic about the TENs Machine and he said they do work and I could purchase one if I so wished… I so wished and it arrived and I tried it… and ended up with a very sore calf. I decided to read through the instructions and reached for the box… and read on the side of the box that people with DVT's should not use the TENS M?C! I was being treated by the Doctor for a possible (since confirmed) DVT!???! A pity he had not actually seen one in its box.:-P

Here is something left field that I thought of while writing the above. When I get up to go to the toilet I put on my slippers… and straight away the pain in my feet eases considerably… only to return when I climb back into bed (sans slippers). It is obviously down to pressure on my feet but I have noticed that it is not as good when I have not used my slippers (either because I can't find them or I have been in a rush). So I conclude that it is the immediate pressure that counts the most. So I am going to look for something akin to bed-slippers/shoes, if there is such a thing and I will try them out. If they work I'll let you know.8-)

I'm sorry for your delayed appointment – they are bad enough at any time but especially so when you really need them.

With best wishes

Dai.

[JdaxParticipant]

Hi Debs. I developed PN in my feet from Velcade 18 months ago on the 4th cycle. At its worst, I could hardly walk across a room. The improvement was very slow, but 18 months later, it?s improved and the pain is low enough to forget it – well most of the time anyway.

I echo what has already been said?.

I?m sure you?ll get good advice if you call the helpline. You could also Google – Multiple Myeloma Peripheral Neuropathy ? lots on supplements like B Complex, Folic acid, Acetyl l-carntine, alpha Lipoic acid and so on but check they're safe !..

The pain doctor (when you finally manage to see him) should be a big help. Mine added Nortriptylene to the Gabapentin I was on (though it?s usually Amitriptylene) and Tramadol for the pain.
I found if my feet were rested physically from a good night?s sleep made a difference (OK, the sleeping pills helped?).
When it was bad in the day, I used to lay on my front on the bed, feet on a couple of pillows, soles are facing the ceiling, for 20 ? 30 mins till they stopped ?jangling?.

Maybe it?s worth experimenting ? even with the bedsocks !.

I?ll keep my fingers crossed for you Debs and hope you get the help you need soon.

Jim

[DebsParticipant]

Just thought I'd give you a quick update after my appt with the pain clinic. It is quite a frustrating story!!
I went in, and after listening to him talk over me constantly, he decided to put me onto pregablin as I had been on it by mistake pre-transplant (along with tramadol and morphine – not meant to be given together!)and it had worked then. I explained that I had been taken off it and put onto gabapentin because my GP had refused to give it to me as it was blacklisted in our area. He didn't listen to me.
He then wrote the prescription and I questioned why they had only done it for 14 days when my appointment was going to be 6 weeks away. He said that my GP would have to issue the rest. I reminded him that I had been turned down before and he checked with his boss and came back and assured me that it wouldn't be a problem. I then questioned that he had put 150mg when he wanted me to titrate and start with 75mg. I said that last time my nurse had done that, I hadn't got any tablets at the lower dose and so had needed to go to my GP (I live 1.5hours away from hospital). He said that pharmacy knew what they were doing. I shut up.
Anyway, I got home that night and they had given me the 150mg tablets with no 75mg tablets. What a surprise! Why didn't I check in the hospital…why should I have to?
So I called the hospital the next day…they apologised and said they would fax a letter to my GP so I could get the 75mg tablets. Guess what….that evening I got a call saying my GP had faxed back refusing to issue the pregablin as it is blacklisted. DIDN'T I TELL THEM ALL THIS IN ADVANCE?!?!?!?
Anyway, the long and short of it is that we now have to apply formally to our PCT to issue the drug (despite NICE stating that it is a first line drug!)..god knows how long that will take. In the meantime, I have been given nortriptylene (or however you spell that) to take in the evenings….perhaps there is some improvement….
Sorry for the rant….needed to get it off my chest. It is so wrong that when people are in pain, they have to fight these things. My situation isn't too bad in comparison to some, but I can only imagine how those people must feel. On this basis, my husband is now writing formally to the PCT to challenge why they have blacklisted a drug that NICE advocates. I'll try to remember to update how it goes!!
Rant over
Debs x

[brochoParticipant]

Hi Debs if ever a rant was needed that one was ! How infuriating for you and why dont they listen to us the people who are on the sharp end of their service . I had problems after seeing a pain consultant , between him and my gp it took weeks to get my morphine and pregablin sorted out Actually I dont take the pregablin anymore it made me very dozy in the mornings and the worst pain has gone thanks to radiotherapy Good luck to Nick I hope he gets a decent response to his complaint lots of love Bridget x

[eveParticipant]

Hi Debs
I do feel for you,they treat you like you are thick as two short planks,and wonder why patients loose there respect for doctors.
I had a problem,with a doctor last week,in the end I told him I was standing my ground,as i new when Slim was not well did not go down well:-P but worked.

Same doctor couple of hours later could not have been more polite,issued tablets and accepted in the circumstances,with Slims lungs,antibiotics would be given.So may do you some good to throw a paddy,Eve
PS.i was polite but firm

[DaiCroParticipant]

Rant away Debs… and good luck with the NICE/local health board issue.

Funnily enough I might have a similar problem… I rang the hospital today to enquire about my Clexane injections… whether I had to carry on with them long term or be referred to the warfarin clinic. After consulting with my consultant one of the lead nurses instructed me to definitely carry on with Clexane and said, in a hesitant voice, that 'Your GP should be able to prescribe them for you… but if you have any problems get back to us'. The way she said it made me wonder if my GP will have a problem with it. I know that the local health board has argued that certain medicines should be provided by the hospital boards… perhaps Clexane and the like are amongst those 'certain medicines'.

Dai.

[TerryMGParticipant]

Hi Debs, (and thank you everyone on this thread as this has been very useful to me)
[b]General[/b]
Terry MG here?.learning to navigate around the site. Does anyone know the difference it ?clinking in the reply? after someone?s post and the one at the bottom of the page.. brown line??
I have tried to contact [b]Gill[/b] (& Stephen) off line via their picture but I do not know if this has worked?
Still getting to learn the TLA?s ([b]T[/b]hree [b]L[/b]etter [b]A[/b]bbreviations)!! I would really like to know about TENs? what this is. What do you with it? How does it work etc?
[b]Me[/b]
Started the first cycle of Velcade yesterday so very interested on other peoples experiences as I had DVT with Thalidomide. Dr?s at Sidcup said that there is normally less side-affects with Velcade than Thalidomide but I must look out for side effects. I stated that with my SCC (spinal cord compression) I already have ?pin & needles? in my feet and some fingers so it will be not so easy to detect the first signs. If things are Ok to cycle 2 they will change the day to Tuesday pm so they can come and see me after the morning clinic. 🙂
Debs
I really feel for you Debs, and [b]rant way!!!! [/b]I had very minor frustration over DVT socks between Kings in London and the GP. In the end I had what the GP could supply which we so tight that they cut blood supply to my legs!!! A complete waste of NHS money but managed to scrounge some from the friendly staff at Sidcup. But my major frustration was when the Haematology doctors at Kings could not get past the ?clerical? staff making appointments for the King?s surgical team even after the Radiologists put on the bottom of the scans and ultrasounds said this was urgent! So there was an 8 week?s delay as I was originally put on the normal referral list lead time. Meanwhile my ?hickman line lump? went from a large marble to the size of an egg!!!.:-( 🙁 🙁 So I know how you feel when you are waiting and build up to an appointment only for a BIG let-down. As soon as the Surgeons were involved they were quick to act and Director of Surgery was in direct contact with Prof Schey. 🙂 🙂 🙂 So I cannot complain about any of the people who have dealt with me direct, only the ?faceless officials?. 🙁
[b]Reflexology[/b]
My local McMillian centre at Sidcup pay for up to 6 treatments for Reflexology. They will not do this if you have DVT so I think this must be the same as stated for the TENs machine?.so does it massage your feel?? Anyway, I will pay for more session as I think it was really worth it. I found that the benefit not only worked just after the session but became better over the next 3 days in time for the next session the following week. This was the best routine. She said after the first session she could tell my circulation had improved. 🙂 The feeling of walking on stones has changed to feeling of sand and sponge.:-)
Not Listing>:-(
Again this is very frustration when you know you are not an idoit! Apart from above ones mentioned. The left side rib thing has been going on since LAST October. Sidcup can see something but say difficult to define and some in Kings have seen things. But they say when you have xxx done you will feel a lot better. Later I still have the rib issue getting worse although my wellbeing is much better. So I am having to insist that having everything else I would not bring the rib thing up month after month if it was not becoming an issue and that some doctors have seen or felt something and others cannot. I think being between to hospitals did not help but Sidcup seem to be on the case. I am always polite but firm and on most things I have usually get exactly what I wanted.
[b]Clexane injections[/b]
When I was prescribed these for DVT I was told I would be on Clexane for 6 months. Kings gave me 10 days supply and the rest was from the GP with no problems?. Only the socks as above. So the does seem some differences around the country. BTW (By the way) Sidcup have recommended that I use DVT socks at the start of Velcade so I scrounged some more from the good people at Sidcup after telling them the story above.
[b]Slippers & Socks[/b]
Margaret has started to call me EGOR.;-) Because with scars in my body and neck from the Hickman line removal thing which had a pump thing attached, for the first few days. Added to which I have had a ?face shift? so the skin under my chin has been pulled to the right and the way I walk with SCC!! So the thought that I might need pink socks is amazing!!!! 🙂 I will experiment with the slipper thing as for a few weeks the left big toe sometimes painful and I do not want this to get worst.
Have a good week end my MM friends?. Terry 🙂

[MJC1970Participant]

Hi Debs and everyone

I hope you don't mind me writing to you but I was wondering how your PN was doing? My mum, who was diagnosed with MM in Dec 2011 has now been hospitalized due to PN because she can't stand or walk and she can barely hold anything. She is in constant pain. (She had two weeks of Velcade and this is the result).

The hospital started her on Gabapentin yesterday but I understand it takes a while to build a level up in your system.

Did you ever try the TENS machine and did it have any effect?

I hope you are doing OK.

Mandy x

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