[richfsModerator]

Hi Mr I Am Positive (a good attitude to have!)

Wow, sounds like a rough ride with Covid, but good that they got you through it and now starting treatment for myeloma – a lot for you to take in.

What treatment are you on? Most myeloma treatments are much more tolerable than ‘traditional’ chemotherapy, mostly it’s the rollercoaster of excessive energy and fatigue from the steroids that get to you. Keep your positive attitude and make sure you fit in some good things each day, look to the future when you’re off treatment and well.

Best wishes,
Rich 👍

[richfsModerator]

You’re welcome Shamrockgirl, do let us know how you get on.

Hi ‘485’, just to say that I’m in a similar situation to you, now on 2nd line treatment after being diagnosed and treated with DVT and a SCT in 2019 (age 44). Whilst it was a shock to need treatment again, and created a lot of fear, I’m much more aware of the long term treatment options and feel that I can go through this line of treatment much more easily. I’ve been working, walking, cycling, swimming, gardening, etc. more or less as normal, just getting a bit tired and fuzzy from all the dex, but you’re right that it’s easier to face than the initial treatment after diagnosis when your whole world is in a spin. I’m glad that you don’t have any symptoms of concern, and wish you well in your treatment – do let us know about the trial.

Rich 👍

[richfsModerator]

Hi Znab,

I think that’s the best decision. Since you responded well to the induction chemotherapy, I expect that you’ll have a good response to the SCT, it should deepen and lengthen the period of remission that will follow.

The SCT process itself isn’t much fun, but certainly was far more manageable than I had feared. It totally saps your energy, and your gut will likely have a few days of behaving badly, but other than that it’s not too bad for most people. I felt that my team had filled me with fear about it, but actually it was OK and I certainly would have another SCT if and when the need arises.

Best wishes, and do reach out to us on the forum as you continue with your treatment. Remember to look to the better times when you’re in remission and live each day to the full.

Rich 👍

[richfsModerator]

Hi TIA,

I’m in a different situation in that I am half way through the 2nd line DVd treatment, which will be followed by monthly Daratumumab maintenance.

I had DVT followed by a SCT back in 2019 when I was first diagnosed with myeloma, and was told by the transplant team that “Not having the SCT would be like burning bridges” as it’s the best option available, and if you don’t have it when it’s offered, you can’t have it in the future.

As Mulberry says, things are changing – in the US at least – and I’m sure that in the future the SCT won’t be offered in all situations.

After the myeloma relapsed this year, for my second line treatment I was given the option of an induction chemotherapy followed by SCT and then no maintenance, or DVd followed by Dara maintenance. Since Dara is only available on the NHS as a second line combination treatment, or as a single 4th-line treatment, I choose to go with that, also as it offers Dara maintenance. I therefore have a SCT up my sleeve for a future 3rd line treatment.

As I say, this differs from your situation, but shows that in the UK as well, treatments without the SCT are being offered. I’d talk to your team in great depth about it, and consider if other treatments would still be available to you in the future.

Best wishes in your treatment,
Rich 👍

• This reply was modified 1 year, 11 months ago by  richfs.

[richfsModerator]

Hi Paul,

I’m one of the forum volunteers.

Just to agree with Steve, it’s hard to say what blood results are ‘normal’ as myeloma is a complex disease with many different forms. Individually, a patient and their family get to know the key aspects of the blood test that is pertinent to them. For me, it’s the paraprotein and IgG level.

I have a friend who was diagnosed with smouldering myeloma 3 years ago, her paraprotein levels have been stable around 28g/l which is twice as high as the level I was at when I needed to have a second line of treatment for my active myeloma. It’s also just below the 30g/l which tends to be the level at which myeloma is diagnosed. So, you can have stable, asymptomatic myeloma with quite a high paraprotein level.

Myeloma is a complex disease and there are many factors, it’s very individual to each of us, so do speak to your team and ask them detailed questions about what they are monitoring and at what point they would be considering treatment.

Being a nerd, I keep a graph of my paraprotein levels, they started rising very gradually a year post treatment, but then another year later plateaued for almost another year before more treatment was needed.

Best wishes to you and Jen, do reach out to us on the forum, we’re all here for you,
Rich 👍

[richfsModerator]

Hi Shamrockgirl,

Like Tony, I’m a forum volunteer, and a myeloma patient. A good friend of mine has been living with smouldering myeloma for 3 years and has regular blood tests to monitor this. The longer you have smouldering myeloma, the lower the chance that it will develop to active myeloma, although that is always a possibility.

I am also in contact with a myeloma patient in the US who was diagnosed with smouldering myeloma age 45, which progressed to active disease 6 years later which has needed treatment over the years. That was 25 years ago, he’s now 70 and living a very active life.

Fatigue is, indeed, a major symptom of myeloma.

How are you getting on in your research about this illness? There’s so much to take in when you’re first diagnosed, the main thing to understand is that whilst myeloma can’t be cured, it can be treated, and thanks to this many people are living for many years.

Do reach out to us on the forum, we’re all in this together!

Rich 👍

[richfsModerator]

Hi Mark,

Well, you’ve certainly sparked a telling of difficult but positive stories! I’m really glad that they’re helping you to get some hope for your future. The diagnosis of myeloma is such a huge shock, especially to fit and active people, and the medical teams focus on treating the disease, as they should. It’s difficult not to sink into despair.

A month before suffering an unexpected fractured rib in November 2018, I’d run 3 or 4 miles a day to clock up 100 miles in a month. 2 months later I was skiing in the Czech Republic (after which I could barely walk due to rib pain), 3 weeks later I was fine, but then within a couple of months I was in a bad way, was quickly diagnosed with myeloma and by the time treatment started a couple of weeks later, I could barely walk across the room.

My bone pain improved gradually during treatment, but I’ve definitely been left with some ‘residual pain’, which is generally very manageable.

Last year I cycled a total of 1,000 miles, and each of the last 3 years I’ve been on some 15-mile hikes on the South West Coast Path and Dartmoor, as well as cycling to the sea for swims during the hot weather.

I am about to start another line of treatment as the pesky paraproteins are rising and I’ve had some bone pain, but feel much calmer about it than the first time as I know it to be effective, and that I got back to a good, active, busy life when I spend more time worrying about getting work done, maintaining the house and garden, paying the bills etc., than I do about having myeloma.

You’ll get through this, give it the time it needs, and do listen to your body and rest when you need to.

We’re all here for you, it’s a tough road, but there’s a great view from the top.

Rich 👍

[richfsModerator]

Hi Josie,

I’m sorry to hear about your symptoms, waiting for an appointment like this is a horrible thing to endure. Of course, until you have that appointment, and some tests such as a bone marrow biopsy and a PET or MRI scan, you won’t know your diagnosis, but it’s natural to look into the likely meaning.

In 2019, I was diagnosed with myeloma, following a few months of bone pain and a blood test showing a low white cell count and high protein levels. Myeloma has many sub-types, some relating to light chains and others to IgA, IgG or IgM immunoglobulins (para-proteins).

Rather than getting bogged down in the figures and uncertainty, I would just say that myeloma is a very treatable disease. After a few months of treatment where the main side-effect is fatigue, you can get back to normal life. For most of us when we’re diagnosed, it feels like a death sentence, but in fact life does return. Generally, patients expect to have some more treatment each few years, and there are many different treatment options available. So, do hold on to hope, there’s lots that can be done and you can look forward to getting back to an active and worthwhile life.

Do give the infoline a call, or reach out to us on the forum, we’re here for you and we know what a shock it is to be somewhere like this.

Best wishes,
Rich 👍

[richfsModerator]

Hi, this petition on Change.org might be of interest as it relates to the cost and difficulty of getting insurance when you have a cancer diagnosis, even if you’re not on treatment and are fit and well at the time.

https://chng.it/wRNNWmVjQ6

I’ve not travelled in the last 3 years due to my diagnosis of myeloma, the treatment and then the Covid pandemic, but I’d like to think that I’ll be able to travel easily in the future.

Rich 👍

[richfsModerator]

Hi bumblelion,

Myeloma UK have recently trained some peer-volunteers to assist on this forum, I am one such person.

Sorry to hear about your hubby’s diagnosis and previous health problems. Well done for caring for him – it’s difficult for you (my wife would agree), so do reach out to us on this forum and the Myeloma UK Infoline.

Just to add a voice of hope – I was diagnosed with myeloma in 2019 and had VTD treatment followed by a Stem Cell Transplant (SCT). During that period I suffered bone pain and compression fractures in 3 vertebrae, it was taking me 40 minutes to get out of bed and I could barely walk across the room. I have since returned to normal and active life (don’t mention the pandemic!) Last week I cycled a total of 90 miles and swam in the sea most days, so the damage to the bones that myeloma causes can certainly be sorted out by the treatment and the body’s amazing ability to heal itself.

Best wishes and do give us a short for any advice or support, the treatment is bearable and effective, keep your spirits up,
Rich 👍

[richfsModerator]

Hi Ken,

Sorry to hear about your diagnosis, and that it’s taken a while to clarify what is affecting you. Myeloma can be very difficult to diagnose, but once that’s done the NHS will start treatment quickly. Whilst it’s the last news anyone wants to hear, at least when you know what you’ve got and what can be done about it, you can focus on getting through the treatment and back to healthy life.

Myeloma UK have recently trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

Do always push your haematology team if you’re waiting for appointments etc., the secretaries can be contacted and the specialist nurses are generally your best point of contact for help with understanding the treatment (consultants can tend to be rather matter-of-fact about the options).

The Myeloma UK Infoline is very helpful, for patients and their families, and you’ve clearly found this forum, so do reach out to us for any advice or support.

Best wishes,
Rich 👍

[richfsModerator]

Hi Fern,

Well done on getting through the SCT, I’m glad that it went well. It’s a tough treatment, but effective.

Myeloma UK have recently trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

I had a lot of bone pain before starting treatment and suffered some compression fractures in my vertebrae, but hadn’t had any long-bone pain at all. Last year, 2 years post SCT, I had frequent pains in my tibias (shin bones) which started to really concern me. A PET scan showed that there was “nothing to worry about” and a couple of months later the pain all but ceased. Do mention any pain that you have to your haematology team, but I’d say that I always have some residual pain, and that it can sometimes be in different places.

Do give us a shout if there’s any advice or support we can give,
Rich 👍

[richfsModerator]

Hi Ian,

Just to agree with what Mick, Joanne and Tim have said – the SCT is added to the induction chemotherapy to really clear out your system before letting your body get back to life, and gives a longer period of remission.

I had a STC almost 3 years ago in 2019 and have not been on any treatment yet, although my paraproteins have been rising very slowly for a while now. I’d certainly go through the treatment again for the benefits it gives.

How are you getting on with the SCT process now?

Best wishes, and do give us a shout if we can offer any advice or support,
Rich 👍

[richfsModerator]

Hi Nick,

Myeloma UK have recently trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

I’m sorry to hear that you’re no longer asymptomatic, how long were you under observation for? How are you getting on with the D-VDT?

Daratumumab wasn’t around when I was treated in 2019 so I was ‘just’ on DVT which I found tolerable, it was just the fatigue which was a bit of an ordeal, and the sleepless nights from Dex, and chemo-brain, but apart from that it was fine! It really helped to reduce my bone pain and got be back on a path to good health. As KH says, the side effects (much as the disease) affect people in a very individual way.

The SCT was not as bad as I feared, but was very tiring and I felt ‘pretty ropey’ for a week in the middle of it.

JC – If you’re reading this, how are you getting on, hopefully you’re over the worst days post transplant and your stem cells have engrafted?

Best wishes to you both, and do give us a shout if we can give any advice or support,
Rich 👍

[richfsModerator]

Hi Sian,

Thanks for the update, that’s good news indeed. With any health issue, getting a clear diagnosis is the first step to some help, treatment or medication. I hope that they’re able to ease the inflammation and that your pain decreases.

Best wishes,
Rich 👍

[Author]

Posts