hubby is just finishing cycle one of radar treatment for myeloma and due to see consultant tomorrow. What sort of questions should we ask about bloods and results etc, and is there anything we need to do at this stage? It is all overwhelming and better to ask you who are going Or have gone thru it. We will be asking what sort of myeloma & how far on it is as we haven’t been told much so far. Any advice or tips most welcome . Many thanks….
Hi @Olivia I would advise you write down all your the things that are playing on your mind and questions so you feel organised.
Prognosis is a valid question
What will be the way forward?
Affect on his/your lifestyle/work?
How often will appointments be?.
Your hobby’s medical team are the experts on the RADAR treatment, unless others on here on this trial can help.
Please do let us know how you get on and we will be about on our forum over the holidays.
Be very kind to yourselves and please do keep posting
Thanks for reply Erica.
I made a list of questions and they answered most of them. They did say it was a bit early, so I did wonder why arrange the appointment? They did say though that hubby was high risk due to his genetics, so needs an additional drug on cycle two of treatment , namely isatuximab. Not sure if anyone else had this who can advise on any side effects?? I didn’t get chance to ask about the genetics but assume it’s to do with how hubbys cells react/ interact….
I’ll have to ask about a prognosis the next time or further down the line. I did feel uncomfortable asking the questions, but will continue to do so if there are things we need to know. They did say he has igG kappa, so am going to research that next.
This site is great, Thankyou to all who are involved. Hope you are doing ok Erica, be kind to yourself too.x
I have IGGK myeloma with boney disease
IGGK is the most common myeloma
Some people will have high risk factors like gains of genes eg 1q gain and depletions of genes
T4-14 is another that comes up.
I will link a copy of genetics and myeloma from myeloma uk
He will have an appointment after every cycle so they can keep an eye on bloods and how his myeloma is responding to treatment not sure what you mean by too early
You shouldn’t be uncomfortable in asking any questions either and consultant should be more than happy to answer them.
So sorry that you have myeloma. You seem to know all the detail about it too.
Many thanks for the link. I have just read it, so interesting. I love science, it explains so much. I will ask as many questions as needed, despite being made to feel like I was taking up too much time! If I didn’t ask we wouldn’t have found out as much as we have so far. The 2 consultants we have seen so far, don’t really explain much and just seem “ too busy”. We met a new person again the other day, as you say after cycle one. We asked how treatment was going and he said it was too early to say as his bloods were not back yet. When I asked what type of myeloma he had, he said what do you mean ? I meant what sort of immunoglobulin. Hubby has had so many bloods I find it hard to believe that none have come back! We also had to ask for MRI results as they we not volunteered. We were told he has 2 bone lesions but are less than 5 mm and not to worry. I asked the new consultant the other day to confirm the lesions and he said they will disappear! I wonder if there are too many cooks and they are not talking to each other!! I’m sure they will be fed up of me because I will ask whatever we feel we need to know.
What stage are you at with the process if you don’t mind me asking? I hope things are stable for you.Thankyou for reaching out on this forum, so kind. Hope we speak again. Hope you manage to enjoy the festivities.x
I’m 6 years in with two stem cell transplants under my belt
Diagnosed 2017 relapsed 2021 2nd Stem cell transplant 20months into maintenance chemo doing well I have a very good partial response this time PP and light chains less than 2
Will stay on maintenance until my next relapse
I’m at peace with my myeloma i can’t give it back so I will take it along with me
Light chain bloods take a while to come back so mine are always a month behind
Protein which may take a week unless they get delayed for some reason
Overall bloods are normally available saying that I’m lucky as most of my bloods are done at my hospital
Protein and light chains are sent off I believe
I had a recent MRI and my results were back within a couple of weeks with a call from my consultant
I also had a PET scan a couple weeks ago and those results were back in time for my consultant app last week
Saying all of this I have had to have numerous meetings with my unit and made several complaints since my original consultant left in 2022 and I saw 5 locum consultants who really didn’t seem to care
I now have a lovely consultant that is one of the original team who I trust with my care
Make yourself familiar with the NHS Constitution section 4 where it says
### 4. The patient will be at the heart of everything the NHS does
It should support individuals to promote and manage their own health. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers. As part of this, the NHS will ensure that in line with the Armed Forces Covenant, those in the armed forces, reservists, their families and veterans are not disadvantaged in accessing health services in the area they reside. Patients, with their families and carers, where appropriate, will be involved in and consulted on all decisions about their care and treatment. The NHS will actively encourage feedback from the public, patients and staff, welcome it and use it to improve its services."
So glad that you are doing well. I didn’t realise it had been 6 years. Many thanks for all the information you provide, it is so so useful.
I realise that these consultants must see so many patients but I do think that a few of them need a few pointers when it come to communicating with patients and showing some empathy! I’m still learning a lot about myeloma and blood cancers, so feel a bit behind at the moment.
My hubby has igG kappa, but regarding number of proteins and number of light chains, I have no clue what he has. I did ask but was just told the above. I think it’s important to know numbers so that we can start to compare and see exactly what is going up or down…. Do you know what are ideal ranges for proteins and light chains? I know his immunoglobulin is the most common one but not sure about much else. I hope to educate myself the best I can, it means hubby can just concentrate on his treatment and accepting myeloma…
How did you do with your last stem cell transplant, I think this is the main hurdle to conquer, apart from the high dose chemo just before. It seems to be an individual thing and everyone different. I hope you continue to do well, take care.x