Chin up Jo. the is the time to Vasbyte like mad 🙂
kindest regards
David
How about "Having Myeloma is realy great because you meet such nice people!!!!"
Delete to your hearts content. 😀
Kindest regards – Vasbyte
David
Welcome (?) Abi, this is a very good site for information, it is dedicated solely to MM as you no doubt noticed. There is a lot of old information out on the WWB so be careful when surfing.
With your first appointment Monday it will probably be too late, but some people on here take a recording device to the Consultation. This has many advantages over purely relying on your memory! I am not sure of the site address but I am sure one of the others will be able to post it.
Keep us informed of your Dad?s progress we will always be here to help if we can.
Kindest regards ? Vasbyte
David
Glad to hear you are doing well Jet. I keep meaning to ask everytime I see it mentioned, How is Revlimid administered – tablets?
Kindeste regards – Vasbyte
David
Sorry to hear you had a bad turn Dai, keep going Buddy.
kindest regards – Vasbyte
David
I think Helen's interesting point that the Blood Test "belongs" to the Doctor is where we are wrong.
All information regarding a patient should "belong" to the patient. The Hospitals and Surgeries have it and control access to it but the information should be the patients and if the patient wants a copy of it, it should be freely available.
I know you can get access to your records from the Doctor?s surgery, for a fee, this is not the same.
Kindest regards ? Vasbyte
David
Hi Eve, Yes I take your points and agree with them.
Now you mention it when I was first diagnosed, JUL 2009, I had a chart given to me with the blood readings on and I would ask to have it filled in each appointment. If I remember rightly it always seemed a lot of trouble, for the Consultant that is, at the time and I think I gave up in the end I certainly stopped using it and forgot about it.:-/
kindest regards – vasbyte
David
Well the way it works here Eve, in the Beacon Centre, Taunton, Somerset, is that I give blood 5 days before my Appointment. I then get the results, if I ask for them at the appointment. I find, and perhaps it is my age, that I have not got time to think about the implications then. Normally, I ask for the PP count and I get the rest IF it is included in the standard letter that goes to my GP after the appointment. Personnaly I would like the results of ALL tests [b][u]prior[/u][/b] to my appointment so that I can consider them and compare them with previous tests and then formulate any questions properly before my appointment. Of course this may not be what Dai's mini lecture is all about but it is my two penny worth anyway 😀
Kindest regards – vasbyte
David
I have read the brief several times and correct me if I am wrong but this is a meeting of Laboratory staff, and or, people who work in the background, who supply information to Doctors who then supply that information to us.
When in a chain of information the question is always one of interpretation. We have all, I think, have heard of the Chinese Whisper; where it starts out as "get me some fish and chips" and ends up as XXXXXXXX by the time it has gone through ten people. We are, as Patients, at the end of the Chinese Whisper and it is how the Consultant interprets the information he is given that he gives to us.
Clearly, then what the Patient needs is the information that the Laboratory gave originally which the Consultant and the patient can then discuss and not the information he decides to pass on. So that brings me to my point. The information that the laboratory gives should have a copy for the patient.
I can hear the cries of two technical already in the far of distance! So the information should be clearly laid out and include for example Blood Test result – white Blood Cells; Norm i.e. normal healthy person, Patients result. any comments or directions. The patient can be given this prior to his consultation so that he can study it and formulate any questions PRIOR to the consultation. You will quickly learn which the relevant reading to observe is.
I agree with the three types of Patient and each will treat this information differently I know but one of the things I learnt in Business is that you ?cannot please everybody any of the time? (this is my correction on ?all of the time?). And, you just have to accept that at one end of the scale some Patients will see it as waste while at the other Patients will see it as a valuable tool.
Consultants will not like this I think for many reasons; first and foremost Knowledge is Power and by this action the patient would be given the Knowledge and therefore the power that information bestows is passed to him/her. Consultations would be longer – for the more inquisitive of us shall I say; at the moment I am in and out in a flash.
Finally one of the things I least like is that I do not see the same Consultant every time, I accept the reasons for this but it adds another variable into the information I receive i.e. not only an I at the end of the Chinese Whisper I have a different person relaying that information every time. By having a copy of the Lab report I would have consistent information each time regardless of who the Consultant is.
I rest my case Your Honour.
Thanks Dai for representing us, I hope this is of some help.
Kindest regards ? Vasbyte
David
P.S: I thought I better add a post script of how I see it working in relation to me.
Appointment 09:30. I normally book into the main receptionist at 09:20. When booking in the Receptionist finds my Hospital files and makes necessary notes and places my files in the Consultants case load. I then wait in the main reception area to be called through to the Consultants waiting area, normally about five/ten mins. I then wait in the Consultants area to be called through for my consultation by ?a? Consultant, normally another ten minutes.
I would expect that when I book in at the main receptionist she, when collecting my hospital files (which already contains the Laboratory report on my blood, would give me MY copy of the Laboratory report. I could then study it whilst waiting to go into the Consultation. A very simple procedure with little extra work.
Sorry about this answer Sarah, but "how long is a piece of string?" :-/ . We are all different and as such some take longer than others.
Personally I would not let anyone near the house for the first 4 weeks, my wife and I had a Christmas on our own ( I came out of the hospital on 15th Dec 2010) the first time in 18 years ? no children or grandchildren but the good news is that my taste buds (they go during the SCT) returned Christmas morning and I could at last taste food.
During the cold spell, January/February, we had an outside water pipe burst and I got out there in parker, scarf and hat to fix it!! He is young and I would think if he is reasonably fit he will probably be ok to go to work after a month, on light duties, but the best person to advise you on this is probably one of the younger people, like Tom (someone else you will meet on this site).
Yes, it is regular check ups after that, mine are every 3 months. They take a blood sample and see how your body is doing.
Kindest regards ? vasbyte
David
Hi Sarah, Welcome(?).
My first piece of advice is to stop looking on the internet! A lot of the information is out of date and the treatment of Myeloma has moved on since most of it was put up. Two sites worth investigating are this one; it has a host of information on it and is up to date and specific to Myeloma, the other one I would recommend is MacMillan that has a Myeloma section but is not targeted specifically at Myeloma.
The stem cell process is that they collect stem cells from Henry, 2,000,000 is the minimum required. The collection process is painless and similar to giving blood. Prior to the collection Henry will have GCFS (this may be the wrong letters) injections to stimulate the manufacture of stem cells in his bone marrow. You can get a lot of bone pain at this stage; personally I found a hot water bottle placed on the pain did help. It took me two goes to get 2 mil of the little blighters but most I am told do it in one go.
The stem Cell transplant can be different depending on the local Consultants and how fit you are. For my transplant I was in hospital for 4 weeks. After a series of tests to ensure that all parts of my body were working ok (I am 68 and at the upper limit for SCT) I was given Melphlan which is a very strong drug that kills all fast moving cells in your body, hair cells (so you temporarily lose your hair ? mine came back dark and curly, I had mousey light brown hair). The stomach and throat cells are also affected and your stem cells. Then you are then given back your stem cells that have been kept in deep freeze. All of this is pain free, however following it you can get a very bad throat, have the runs (Dai, who you will meet on this site, holds the record for the quickest run to the toilet I think) and sickness. This does not last long a few days. Then it is a waiting game until your White Blood Cells, platelets, Neutrophils (the body?s defence mechanism) and other blood elements are rebuilt by your returned stem cells. As I say it can be different at each hospital but this is the basic system.
Following Henry?s STC he needs to stay away from anybody with a cold etc etc… as his body slowly rebuilds his immune system and he will get stronger as the days go by.
I hope this is of some help if you have any questions please ask.
Kindest regards ? Vasbyte
David
Glad to hear everything is going well Keith. As you say keep going.
Kindest regards – Vasbyte
David
Hi Kieth,
Remission is not just the PP level as I understand it, although that is a main indicator. I have been told that they look at Blood Measurements of various indicators like White Blood Cell count, Neutrophils etc… . If the PPs are ZERO and the rest of the measurements are within their correct zone or parameters then that I think is remission. If any of the measurements are not in their correct zone or the PPs are measurable then you are in partial remission, whether that is a very good partial remission is probably down to the Consultant!
My Consultant told me that they no longer use the term remission at my hospital; it is now referred to as ?stable?. So my Myeloma is stable.
Kindest regards ? vasbyte
David
Sorry to hear the bad news Gina. May your God walk with you at this difficult time.
kindest regards – vasbyte
David
Hi Glyn and welcome. Your hubby seems to be going for the full monty, auto SCT and Allo SCT. I wish him the best of luck.
Kindest reagards – vasbyte
David