[graham-cParticipant]

Needless to say the forum doesn’t need spam posts peddling dubious foreign prescription services.

–SPAM DETAILS REMOVED–

Respectable organisations don’t hide their identity behind a privacy protection service and the website was created less than a month ago.

This website, which has been in business for 7 years,

No it hasn’t

— Edit by WebTeam

Hi Graham
Thanks for the heads up on the spam. I’ve removed the details from your post now as I’ve cleaned up the junk. If you see any more please report it directly to webteam@myeloma.org.uk and I will kill it as quickly as possible.
Regards
Stuart
Myeloma UK WebTeam

• This reply was modified 9 years, 2 months ago by  graham-c.
• This reply was modified 9 years, 1 month ago by  webteam.
• This reply was modified 9 years, 1 month ago by  webteam.

[graham-cParticipant]

I would recommend that you make a Subject Access Request for all medical documents. reports, tests and scans produced by the hospital department in respect of your husband’s treatment. It’s a simple procedure and the hospital  website will detail how you go about it.

The maximum cost they can charge is £50 and they are legally obliged to fulfil your request. You will then know what they know. It may take a month or two and, if they should be foolish enough not to comply, I can let you know how to make them very sorry.

When I had kidney cancer the Consultant was nothing short of rude to me the first time I saw him and, immediately prior to him operating, he was rude to my face again. He also blocked me from seeing a cancer nurse. It’s not helpful to anyone for a Consultant/doctor to treat you in an offhand fashion as it affects your husband’s life and the wellbeing of your whole family.

I don’t think any doctor/Consultant would like you to make an SAR but, if they won’t give you the information to which you are entitled, there is no option. I make them quite regularly now as my hospital has been poor at providing details of tests.

The principle is that you are legally entitled to know whatever the doctor/Consultant knows about your illness but, if he won’t treat you like an adult, I don’t see any reason why he/she should be treated like an adult, that’s why I am happy to go behind his back.

It’s very strange that when a nurse takes your BP in hospital he/she will try to avoid the patient seeing but actually it is YOUR information, not hers.

Making a Subject Access Request also avoids you coming into direct conflict with the Consultant and having to harass him. Until I made my SAR I knew nothing about my cancer.

[graham-cParticipant]

Having turned up today at my chemist for the third time to collect the remnants of my prescription I thought I was going to be let down again judging by all the searching they were doing. I was feeling very unwell, and not a little soggy, so I terminated our relationship without further ado.

Chemists trumpet this new Electronic Prescription Service but I can’t see how it affects patients at all and, if my experiences are anything to go by, it appears to be a disaster.

I now have so little faith in the system I’ll have to go back to my GP to get a printed prescription to take to my nominated chemist in the hope that it works a little better this time. At least this chemist is a little nearer to me. I need to get one item removed from the prescription anyway.

The problem appears to be that the Consultant has to tell you and your GP of any changes, and your GP then has to tell the chemist. The chemist then has to alter their ordering system to accommodate any changes which, in my case, isn’t happening or they’re doing it wrongly.

 

[graham-cParticipant]

I like to think that I’m fortunate that the condition is being monitored, particularly when I read posts like the recent one by a person who only discovered the illness when they suffered critical spinal and kidney damage. I’m sure that there are many people with MGUS who don’t know it and are at risk of a very nasty shock.

[graham-cParticipant]

A good result that puts my mind at rest. My GP rang me to confirm that I have been put on the CKD register and she asked if I wanted anything else done, to which I replied ‘No’. It may seem that my request was pointless but I have another eGFR coming up and I want to know that result first, when I’ll also be informed whether or not my PP’s/FLC’s have changed significantly.

My eGFR may have improved (unlikely) in which case nothing needs to be done, my eGFR may have fallen again with a rise in PP’s/FLC’s when the matter is in the hands of Haematology and I can take it up with them, and presumably they’ll refer me to Nephrology.

The point being that without a rise in PP’s/eGFR I suspect that Haematology won’t be involved and I’ll need a referral from my GP.

In the meantime my GP will arrange a urine test for Protein/Blood. My past experience with Nephrology (kidney cancer) hasn’t been good and I want any referral to be sound. That will be in my GP’s interests and my own. I could jump up and down and demand a referral now, because my results qualify, but that wouldn’t be helpful.

[graham-cParticipant]

Having a quiet ‘rant’ is good for you and I know how you feel.

In Leicester they devised a wonderfully bizarre system for notifying patients of results that didn’t work, created confusion and didn’t actually inform me of results. They termed the phone calls ‘appointments’ so that when i received a text message confirmation of an ‘appointment’, without any clue as to whom it was with, I was in a panic that I had missed something. I didn’t always get the calls and, when I did, the most I was told was ‘okay’ which didn’t reassure me.

Sometimes I get a copy of the letter with results that is sent to my GP, but not always. In the end I decided not to allow myself to get wound up by it, and so when I need results I make ‘Subject Access Requests’ to the hospital which cost £10 a time, and I get the full print out of blood results.

If anything that means that I am better informed than the Consultant/Registrar and considering that my eGFR is in a continuing death spiral without anyone noticing, it’s £10 well spent.

What any of us seek is reassurance that there is nothing to worry about and the absence of results is the worst option.

My next appointment at Haematolgy is the middle of October and my blood test will be carried out at my GP surgery three weeks beforehand, so there’ll be no excuses for not having the results – I hope. The point is that I can control my concerns a lot better if I know the results, even if they are adverse. If you don’t know it’s human nature to think the worst. If you don’t get anywhere as a last resort use an ‘SAR’ to which all hospitals have to respond by law. They will have the procedure on their website.

[graham-cParticipant]

For me, Chrissie, as long as I can demonstrate to myself that my results are steady, then I can discount any symptoms I experience as nothing to do with myeloma. Of course having had kidney cancer, my kidney function is of special interest to me especially as they are/it is at risk with this illness. This is made worse because information was withheld from me then that impacted me badly. It wouldn’t be in anyone’s interests for this to happen again.

My GP should have received my letter and I have quoted the NICE guidelines for treatment of CKD, but I have added that I am happy to ‘hang fire’ until my next results and appointment in October.

http://www.nice.org.uk/guidance/cg182/resources/guidance-chronic-kidney-disease-pdf

The risk as I see it is that if my PP’s/FLC’s haven’t risen significantly they’ll consider that it isn’t their responsibility so my letter puts my GP on notices that if my eGFR has declined again and Haematology aren’t impressed, then it will be up to her.

It does mean that I have control, and I can avoid surprises through something being overlooked . Though my results easily qualify me as CKD Stage 3 I presume that I won’t receive that classification until Urology say so.

It’ll make the October appointment interesting and I’ll know what I need to know and ask. If it’s a Registrar I’ll do it sympathetically.

I do admit to being somewhat conflicted especially as I feel a little peeved that no one appears to have noticed the decline in eGFR

Firstly in the grand scale of myeloma, an eGFR of 54 isn’t at all spectacular or threatening and the incredibly metronomic decrease is steady but not obviously pointing to an imminent crisis.

Though, on the other hand it does qualify under NICE guidelines as Stage 3a CKD and in spite of the progression appearing steady, it does fall within the definition of accelerated progression and four continuous declining results suggest a continuous process.  An upturn in eGFR in October would take the edge off my concerns, but what happens if my PP’s/FLC’s don’t explain the situation ? Presumably then my GP has to make the referral to Urology.

If it weren’t for Haematology my GP would be required to bounce me off to Urology immediately but it makes sense to discover whether or not Myeloma is the underlying cause, because that would be what Urology would be looking to do themselves. I just hope that Haematology have noticed otherwise I’ll be looking with a squinty eye. With my medical history it could be something unassociated with Myeloma which would be a blessing I don’t need. I did have kidney cancer, but kidney to kidney isn’t a usual progression so that’s not my primary concern.

As much as it will torment me my best option is to get a favourable eGFR and for that I must wait.

In the meantime I have asked my GP to confirm that I have been placed on the surgery’s CKD Register as required by the ‘GP contract Quality and Outcomes Framework (QOF)’.

http://www.britishrenal.org/BritishRenalSociety/files/e1/e182721f-77af-4386-b7e3-7f8b777c8b12.pdf

I’m only doing that because 1. my results qualify 2. there is a possibility that my EGFR reduction isn’t Myeloma related 3. things that should have been done haven’t been done in the past and 4. it puts testing and treatment into a set pathway.

I may ruffle feathers, but i’m running short of kidneys.

• This reply was modified 9 years, 2 months ago by  graham-c.
• This reply was modified 9 years, 2 months ago by  graham-c.

[graham-cParticipant]

After my bad experience with kidney cancer I do like to keep an eye on things. I am disappointed that no one mentioned my deteriorating eGFR to me and my GP seemed to be confused and actually gave me incorrect information.

I will write to my GP to point out my results and also quote NICE guidelines. My PP/FLC results  have been increasing but are unremarkable and I find it difficult to believe that they could have increased so much in a short period to be responsible for the eGFR results, but I’ll wait for my October appointment for updates. If I get a Registrar I’ll be gentle with them but unless my eGFR has improved, either they, or my GP, will need to refer me to Urology (under NICE guidelines). I’ve got all my results and details that I can take with me.

As an afterthought I would presume that having a declining eGFR my PP’s/FLC’s will rise simply because they aren’t being cleared from my system so efficiently. It is then a matter of which one is that causal factor and which one the symptom.

This is why I insist on knowing my results. If I hadn’t known them I wouldn’t know the significance of my October appointment and what to ask. If I weren’t already involved with Haematology it would be a straight referral to Urology but, with Haematolgy involved, they had better give their opinion first.

• This reply was modified 9 years, 3 months ago by  graham-c.

[graham-cParticipant]

Hi mark86

Trying to comprehend myeloma and the significance of test results is a baffling issue but, if you spend enough time on it, you can make sense of it all.

However, first of all self-diagnosis is not a good thing as it limits or directs your GP to make one specific investigation, when it could actually be something completely different. As an example I had kidney cancer in 2007 but I was originally referred to Gastroenterology as it was originally evidenced by a lump under the rib cage at the front. It turned out to be a ‘massive’ malignant kidney cyst. I was kept in the dark and didn’t realise the significance that at one stage I was at work with 8 litre bottles of water on my desk. I didn’t tell anyone and they didn’t ask.

On that subject, considering the detail of the tests you’ve had, do you have your eGFR result ? Though my eGFR is okay for someone missing a kidney, it seems like a result that might be useful to know for you.

As regards myeloma, my results are out of range and generally speaking a result of FLC’s under 100 is considered insignificant, and I don’t mean that disparagingly. I am at the MGUS stage in spite of my out of range results and I am at the watchful waiting stage. Even if they increased significantly I still won’t be treated unless they show a continuing trend and/or reach pretty high levels.

Even at my levels I shouldn’t have symptoms so it’s a waiting game for me and I try not to let the results take over my life. The time before last they went down, so I didn’t ask about the last results and will get updated in October.

Your symptoms probably don’t relate to myeloma but I’d ask about your eGFR (estimated globular filtration rate – basically a figure denoting your kidney efficiency) because kidney issues can give you some funky back pains. My figure is usually about 60 which is fine for me, and if stable, is no reason for concern. A kidney stone is like having someone stick a red hot needle in your back and is shockingly bad, but a simple UT infection could be responsible.

I’m not qualified to give an opinion but myeloma doesn’t seem the most likely cause of your symptoms and I refuse to worry about my MGUS until I have good cause to.

• This reply was modified 9 years, 3 months ago by  graham-c.

[graham-cParticipant]

Hello yvonnese.

I am inclined to agree with you and though I am in a low risk category even as regards MGUS (at present) I have always considered my immune system to be wayward. The major problem is not so much that it is less effective but that it is liable to over react when dealing with an illness/infection. Some years back I had a flu jab and my body’s reaction was quite spectacular. The point of injection became a hard lump, I had the worst bout of flu in my life (in fact that’s the only bout of flu I can recall having in living memory) and I lost the use of my shoulder for about a year. Since giving up on flu jabs I have never had flu again.

Bearing in mind that the symptoms of flu are the effect of your body’s immune reaction, if your body’s immune system is ‘flakey’ (or the vaccine is faulty), you can get a ‘pseudo’ bout of flu from the flu jab. I wouldn’t ever contemplate having another flu jab but that’s based purely on the effect it had on me.

Any diagnosis does have an effect on a person, which is not an attempt by me to disregard your experience. When I had kidney cancer my experience with the hospital was horrific from beginning to end. At one stage I was at work with ten litre bottles of water across my desk and I didn’t realise that it was abnormal to drink such vast amounts of water and I never drank water beforehand. I never mentioned this to my GP or the hospital because they weren’t listening to me.

If I have learned anything from that experience it is to get your results (which is imperative and your legal right) and try and reach level-headed and sensible conclusions based on the symptoms you are experiencing. I am alive today because I fought my Consultant.

I would go as far as to suggest that it is absurd to suggest that your immune system won’t be affected with a disorder like this but, in the eyes of the hospital, it isn’t a treatable or life-threatening condition. Have you been in hospital with your uti’s and is your eGFR stable ?

I can’t diagnose what’s going on but, if they won’t deal with it as a symptom of MGUS, then it seems sensible that they investigate it as potentially being something else.

 

[graham-cParticipant]

I cannot answer your question directly tm1960, but I find the best way to monitor my condition, which is at the MGUS stage, is to monitor my blood test results. With MGUS I am currently at low risk and I would not expect there to be any significant symptoms. I always look at paraproteins, free light chains, eGFR and kappa/lambda ratio and they tells me how the disease is progressing, if indeed it is. Last times my readings had lowered, but it is still there. If a rise in readings coincides with an intensification of symptoms then it’s circumstantial evidence that they are connected.

I have plenty of symptoms and, having had kidney cancer, they could be related to that or the treatment I received. As long as my results remain steady and low then any symptoms I have are likely to relate to something else. I have a prolapsed disc that occasionally slips, leaving me barely able to walk when it happens and my back will object if I go on long walks. As a precaution my GP sends me for x-rays when it happens but pain killers and anti-inflammatories put me right.

If you’ve had scans the simple thing would be to ask if they can identify on them what is causing the pain in your back – and abdomen. I do have problems with my abdomen but I’ve had lots of investigations and nothing has been identified and, I suspect that if I push too hard for intervention, things could be made worse. I did discover that I have diastasis rectus as a result of over exertion in my younger days, which is basically a separation of the main abdominal muscles.

Knowing what is causing symptoms is a help and enables you to better judge which are symptoms that need to be addressed and those you have to cope with. Have they given you any medication for your arthritis ?

If your myeloma is not advanced, it’s a long slow slog hopefully but, if you have symptoms affecting you badly, what’s causing them ought to be identified and addressed. It helps you if know your myeloma blood test results.

[graham-cParticipant]

I had mine at Leicester Royal Infirmary Tony Farquharson and I only had gas and wasn’t offered anything else, but it wasn’t a problem for me. I can understand anyone being nervous about it and it would be arrogant for me to consider that my experience is what everyone else should experience. If you already have problems/pain in the area then perhaps it is wise to make it known, and also if you have any concerns.

My own ‘red line’ relates to throat investigations when I ended up on the floor floundering like a hooked fish. My ‘gag reflex’ being uncontrollable. Subsequently when I was with a group having a similar investigation I made clear that it would be impossible without sedation, and everyone else had sedation too.

Presumably I’ll have another bone marrow biopsy in the future, and gas and my i-player, to occupy my mind, will be enough for me.

[graham-cParticipant]

My own understanding, ackibyfobia, is that the Bence Jones urine test is only relevant in the case of suspected amyloidosis, otherwise the blood test is the gold standard for myeloma investigations for a number of reasons. Having said that I’ve had two 24 hour Bence Jones urine tests and I never did find out what happened to the second one, but I have my suspicions. Taking a 24 hour urine sample into your GP or the hospital invokes a strange look from the recipient. It was even funnier when I asked my GP for a sample bottle as I knew I’d need an awful lot of them for 24 hours. The hospital should have provided a container. I suspect the second sample was disposed of in the sluice and, I wouldn’t have minded if they’d told me, because I’m a stickler for getting results. I also took the second sample into my GP’s where I have my blood tests taken and I later read that the sample must be kept cold which I doubt is not possible for such a large container. That’s another reason why urine samples aren’t regularly used and it’s more expensive too.

You can’t have too many tests but the urine test, I suspect, is just to make quite sure they aren’t missing something and they do it once at the outset along with the blood test. If they’re looking for myeloma then usually they perform a bone marrow biopsy and a skeletal survey.

One single test on its own is not usually definitive one way or another, though it gives you a starting point.

[graham-cParticipant]

I can understand why a Consultant/Doctor may wish to avoid providing results, particularly if he/she feels the patient will misconstrue their significance. After all, for most people it will be like a bolt from the blue, and to find that no treatment follows immediately after abnormal results can be hard to understand. It takes quite a bit of research to understand the illness and how it’s treated.

I’m not one to go with the flow but knowing more about the illness and how the medical profession react to patients, I know I’ll get what I want if I am polite, charming and firm and don’t give any appearance of being disturbed by my results. If I don’t get my results then a Subject Access Request will get me what I want, but I’d prefer to avoid it, and I would point out to any Consultant that it’s better for me to know now than go through this formal procedure.

As my last results were improved I am not bothered about the next results and I can go with the flow for the time being, but I’ll be using my charm again in October. After initial problems getting results I don’t think I’ll have further problems.

If your results are worse than mine AND more importantly worsening, then you are in a different situation to me and should ensure you get the information you need. If you have an active illness, potentially leading to treatment without knowing it, you can’t have a meaningful conversation with your Consultant/Doctor.

I ‘duffed’ my back in prior to last Christmas and was barely able to walk, which I didn’t think was related to MGUS but my GP still insisted that I go for an X-ray. Considering I hadn’t seen her before I was impressed but, more importantly, I understood why and I wasn’t unduly concerned. This is an example of where I felt no need to create a drama because I knew where I was with the illness. It is useful to you and can be helpful to the hospital.

Simply getting to my feet took ten minutes and kerbs were a barrier when it came to walking and if I had had any thought it was myeloma related I’d have called an ambulance and walking to the surgery would have been plain stupid. Pain relief and anti-inflammatories and it went away in about ten days. Don’t tell my GP but I’ve kept what’s left ready for the next time which should at least make the walk to the surgery easier.

[graham-cParticipant]

I ask for Paraproteins, the Free Light Chain figure  (whichever one is relevant to you), kappa/lambda ratio and eGFR.  If you have a bad k/l ratio (as I d0) then I suspect it will always be bad. Your eGFR tells you your kidney function. Mine isn’t good but I have only one kidney, so actually my figure is quite good at 60. With all these figures there is usually a significant margin for error, as in the eGFR, so you’re looking for not only a deterioration but a sustained one. Even an eGFR of 50 wouldn’t be of undue concern but they may call for another test in a reduced time scale.

To complicate matters I also take medication for high BP and cholesterol which can also affect the kidneys negatively, but I know that my GP is keeping watch on this.

My figures improved last time and I feel that knowing what they are and a little more about their significance helps me to avoid wasting their time with unreasonable concerns. I’m in a fortunate position at the moment but, if they take a turn for the worse, I’ll want to know about it. Though I have a general idea of the treatment, I’m not going to research it in any detail at the moment as I feel that is just putting my mind in the wrong place.

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