[brian2009Participant]

Hi,

I am at the very beginning of this journey. I have high blood pressure and have annual blood tests to check that everything is okay.  This month, I rang the receptionist at the GP’s to get my results, only to be told that I have an urgent referral to the Hematologist.  I saw my GP who tells me that one blood test shows a score of 42, when the normal parameters are 20-35.  Paraprotiens present. In addition my urine has Bence Jones proteins. These two factors indicate that I have Myeloma, what sort is to be established.

I have an appointment on the 22nd of this month with the Hematologist.  Can anyone tell me what to expect? and the likely timelines for investigations are?  ( Late Jan I should be going to India for 6 weeks!)  Ironically I have had prostate cancer for three years which is being monitored with no active treatment.  62 year old.

Thanks

Brian

[paulapurpleParticipant]

I expect that they will want to do a Bone Marrow Biopsy either when you go in on 22nd or very soon afterwards; in my hospital I saw the consultant in the morning and they did the biopsy in the afternoon. The biopsy will give them a clearer picture of exactly what’s going on. They may also do PET scans, MRI or X rays to see what’s going on bone wise.

I think Bence Jones proteins are free light chains so this may indicate that you have Light Chain Myeloma; I have this too. They will give you regular blood tests to see if the free light chains are increasing, if they are then they will probably start treatment. Treatment is usually Chemo (not necessarily intravenous, can be by injection or tablets only) weekly for about six cycles. Each cycle is usually three or four weeks.  You will also have to take a range of other tablets, which will be explained to you. This is called Initial Treatment and is often followed by a Stem Cell Transplant. I have had two lots of Initial Treatment which haven’t worked for me as I appear to have a type that is quite resistant, but I’m the unusual one, most people respond well to Initial Treatment. I am still hoping to get to Stem Cell Transplant eventually as this gives the best chance of remission.

Tell your consultant about your holiday. If they start treatment they may be able to work around it but only they will know what’s best. It can also be difficult to get travel insurance with Myeloma unless the Myeloma is in remission.

I suggest you look at these links on the Myeloma UK site as it will help you to understand what’s likely; you can then formulate some questions for your consultant before you go on 22nd.

This one will tell you about Initial Treatment:

Initial treatment

This one should answer all your questions about Myeloma and explain the ‘science’!

Infopack for newly diagnosed patients

The Myeloma UK helpline are very good so if you are still struggling with this then give them a ring next week. You will also find great support on the UK Myeloma Support Group Facebook page; I find this very helpful for getting a quick response from others with Myeloma.

Good Luck.

Paula

Good luck

 

[Anonymous]

Hello Brian,

Shock news isn’t it. I guess on the good side of Myeloma, there appears to be a lot of research into treatments, with new types coming along regularly. I was diagnosed in 2013 and my initial treatment was to take part in a clinical trial, Padimac. I would recommend considering clinical trials, as they get access to the latest treatments which otherwise aren’t available. You can find info on this website and also discuss with your consultant. Take someone along with you because initially a lot of information is passed to you and it is good to have someone take notes and think of questions. In between consultations, I compile a list of questions so I’m prepared.

Good luck!

Jan

 

 

[brian2009Participant]

Thanks Jan & Paula

I am, according to my GP asymptomatic, in that I have no aches, pains or other signs, and its only  the urine and blood results that indicate myeloma.   I will be taking someone with me as when I see the consultant, as I appreciate that its easy not to hear everything at such stressful times. Fortunately(?) I had arranged my travel insurance before I had my initial blood tests, so should be covered!

Its going to be interested as to how the first appointment goes! Thanks for all your greetings and support.

Brian

[alisonmarshallParticipant]

I too have only recently been diagnosed and just starting my 2nd round on the cardamom trial. I had no indication other than repeated infections and anaemia, however the initial consultation and treatment was very fast for me, diagnosed mid sept, in treatment after all the tests by beginning October.  I too had a holiday booked and have been somewhat confused by the consultant’s thoughts on the holiday. My immunity is very low and going to a country that doesn’t have great hygiene with masses of people around seems like a bad idea. My holiday will be in the middle of my treatment. Some people have delayed treatment to have their holiday, or delay d stem cell transplant, only to find the benefits of the induction gone and having to start again.

 

Id definitely agree to take another person with you who can hold the info you are told and be aware that sometimes the nurses know more about treatment and effects than the consultant does, or so it seems to me.

I have cancelled my holiday to Sri Lanka, knowing I won’t get cover on insurance to go easily again, but your team will work with you to find the best solution for you.

good luck on your journey, believe that the first few weeks and months are the worst and it does get better

 

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