[lewisboyParticipant]

Hey all,

Unfortunately my father has been diagnosed with MM at aged 60. I’ve done some basic research, but I am looking for further help, if possible. If it helps, we are based in Scotland.

He had a very sore hip, and this is how we found out he had it, after going to physio etc. He has not had any fractures or breaks, just bone pain so far.

After being told he has it, more tests were required (we do not know what stage it is at yet, wether that be smouldering, stage 1, 2, or 3) On monday he went for another blood test, and then yesterday, he went for a CT scan.

What do you think happens next? Can anyone please tell me what the treatment is like? How long does the first round last? What are the side effects? And how long do you have to wait before you can tell if the treatment is working? How long do you have to be in treatment before possible remission, and how long does remission tend to last?

Apologies for the load of questions, just looking for some clarity.

Any other advice and info that you think would be worthwhile sharing with me and my dad would be greatly appreciated.

Thank you so so much.

• This topic was modified 2 years, 4 months ago by  lewisboy.

[kh0305Moderator]

Hi Lewisboy,
Sorry to hear about your dad’s diagnosis, but pleased they have picked it up before any fractures.
My dad was diagnosed at 62 back in January 2013 and his symptoms started with rib pain and he finally got diagnosed after being admitted into hospital with pneumonia.

Having been through a similar journey to you I understand all of the questions you must have right now and was one of the reasons I volunteer here on the forum to share my experiences to try and help others in a similar situation. I had barely even heard of MM when dad got diagnosed, other than a friend’s dad who had died from it after a very late diagnosis so it was a worrying time.

One thing I have learned over the years is that MM is a very individual disease and there isn’t a one size fits all treatment. Dad was very poorly when he was diagnosed and spent quite a bit of time in hospital and had blood transfusions which not everyone would have. He didn’t have any fractures but had a lot of bone damage so getting that under control was important. Dad was initially treated with CTD (cyclophosphamide, thalidomide, dexamethasone) though now treatments tend to be with 4 drug combinations. I cant remember now how many rounds of treatment he had but it worked well and he then went on to have a stem cell transplant in August 2013 which, whilst tough, gave him 7 years of remission alongside revlimid maintenance and zometa infusions to maintain bone health. I would say it took him a year to fully recover from the effects of the stem cell transplant – most notably the fatigue, but he also lost his hair (though it grew back without greys which he was quite happy about!) and suffered gastrointestinal side effects.
Overall he was very lucky not to suffer too badly with side effects of the initial treatments, though the steroids did make him balloon up and moody and in all of his treatments to date his taste buds have been impacted though normal sense of taste eventually returned once treatment stopped.

He relapsed in late 2020 which we spotted straight away when he began suffering hip/back pain which was confirmed by his routine blood tests. He was treated initially with DVd (daratamumab, bortezomid, dexamethasone) which works well for many, but unfortunately it did not work for dad and he suffered bad gastro side effects and lost a lot of weight and felt very poorly. He had a break then was put on his current regimen of dexamethasone, revlimid and ixazomib which so far is working and he is on cycle 8 of 12. He still has his zometa infusions. He has a little bit of fatigue, gastro issues and tingling from the current treatment and the usual side effects from the steroids (also forgot to mention it messes with his sleep for the 24-36h after he takes them) but all in all is much much better in himself.

Initially he was on monthly blood tests and consults but this is now down to two-monthly. In terms of seeing how fast results come through, the bloods will give you a guide, but beware of rogue readings- sometimes it is just that – so take the trend as the main reading. Dont be afraid to ask as many questions of your dad’s medical team as possible throughout and flag anything you are concerned about. Also, a notebook helps as there are a lot of new terms/drugs etc and helps to organise thoughts so you dont forget to mention things in the consults – at east I found it helped me.

During dad’s remission he lived a virtually normal life.

This is just our experience and as I mentioned at the start, everyone’s experience/responses to the meds etc are different, but I hope it has helped a little and gives you some reassurance that whilst it is a terminal disease, it is very treatable and there is a lot of research going on which is moving things forward all of the time. There is a lot of support available via your dad’s medical team and here on the forum or the infoline 0800 980 3332 as well as the peer buddy system (see under help & support tab for more info) and local support groups so please don’t feel alone. Wishing your dad all the best with his treatment xx

• This reply was modified 2 years, 4 months ago by  kh0305.

[lottieParticipant]

Hi Lewisboy,

I am based in Scotland.

This is my experience to date obviously your Dad’s treatment maybe different from mine but will give you an insight.

I was diagnosed in May this year. I had no bone pain just low Neutrophils. I had a CT scan which was normal and then a bone marrow test which confirmed Myeloma which was a shock to the system.

I had a telephone consultation to advise the results and received information by post to read on the treatment that was proposed along with a Myeloma information book.

Two weeks later I had my first consultants face2face where I was given forms to read and sign. I had my height, weight and blood tests done and a echocardiogram the following day, treatment commenced the following Tuesday.

My treatment consists of Daratumumab injection in the stomach and Velcade injection, Dexamethasone steroid and Thalidomide tablets.

The Dara and Velcade are both given on the first two Tuesdays of the cycle, I have another Velcade injection on the first two Fridays. The third and fourth week I only have the Dara.

The Dexamethasone is given as a pre med an hour before the injections and I have to take another dose of steroids the following morning.

The Thalidomide I take each evening before bed as they make you sleepy.

I was also given a bag of meds to take at home which consisted of Blood thinners, Omeprazole, Aciclovir, Antibiotic and a kidney tablet. The Antibiotic and kidney tablet stopped after Cycle 1.

My proteins were 30 at diagnosis and are currently sitting at 3.2 and I am halfway through Cycle 3. I have been put forward for a Stem Cell Transplant and waiting on a phone call.

So far I have had very few side effects, a bit of tingling in the fingers and toes so the Thalidomide was paused for 10 days and dosage reduced from 100mg to 50mg.

I am on Cycle 3 now and only receive the Dara on the first and third Tuesday and the Velcade remains at two injections for the first two weeks so I have a week off from injections.

The Consultant will propose treatment for your Dad it may not be the same treatment as I am on but hope this information is useful to you.

If your Dad does have the same treatment the first appointment is about four hours as they like to hold on to you incase you have any reaction to the treatment so worth taking a phone charger and something to read. I also took a sandwich as I was in over lunch however they did offer me soup and sandwich and you get tea and coffee. I took water with me too.

I cannot fault the treatment I am receiving. The staff have been brilliant and you have a Clinical Nurse to call if you have any questions. The Clinical Nurse will also call your Dad the day before treatment to check how he is feeling and if you have had any side effects.

I was advised that the cycles would be between 4-6 depending on how the proteins came down.

I hope your Dad starts his treatment soon.

Best regards

Lottie

[mulberryParticipant]

Hi Lewisboy, I was diagnosed aged 60, four years ago and was profoundly shocked to realise that I had an incurable cancer.
I too knew a few weeks before all the test results were in that I had myeloma. For those of us with ” a myeloma defining event” which I suspect your father’s bone pain signifies, the disease is active. Drs look for ‘CRAB’ features, ‘C’ high calcium levels which show that the bone destruction/repair system is out of kilter, ‘R’ renal (kidney) problems which are usually caused by myeloma light chains causing blockages, ‘A’ anaemia which is caused by myeloma cells crowding out the bone marrow so other blood cells can’t develop, and ‘B’ bone lesions causing bone pain & possible fractures. They will also test to determine which subtype of myeloma your father has. Most commonly this is heavy chain myeloma, IgG or IgA but can be kappa or lambda light chain, or rarely a different subtype.
It is significant to know the level of myeloma infiltration into the bone marrow. This is often 60% or more, sometimes over 90% . If it is less than 60% and there aren’t any CRAB features then treatment often isn’t started, and a watch and wait strategy employed.
Multiple myeloma has earned its ‘multiple’ prefix in numerous ways, but one is the number of problems it can cause, hence patients need to go through a barrage of tests as Lottie has said, to identify problems caused.
All myeloma is caused by genetic mutations. Some of these are statistically more difficult to treat than others, so genetic testing is done on a sample of bone marrow to check whether we have any of these higher risk genetic features. Another sample of bone marrow looks at the different proteins found on the myeloma cells, which helps assess prognosis for an individual patient (& in time may suggest he or she might respond to specific non myeloma drugs).
A general health check is done to ensure any other health problems are understood before treatment is planned.
Otherwise healthy patients, esp those under 70, usually have a 4 drug regime of targeted myeloma drugs. Although we often call them ‘chemotherapy’ they are more specific. Fairly recently it was realised that patients live longer if ” the kitchen sink ” is thrown at the myeloma from the start, hence the 4 drugs with different mechanisms of action. Myeloma UK has good information about these (Daratumumab, Velcade, Thalidomide, Dexamethasone).
Usually patients have 4-6 cycles, either until the myeloma cannot be detected, or until responses have tailed off and only a small residual amount if myeloma can be detected. Each cycle lasts 28 days, so roughly 4-6 months although sometimes this is extended if a patient needs to change drugs. Often the drugs plus the frequent trips to hospital that they entail, take a toil on patients stamina. There can be side effects such as shingles, peripheral neuropathy, dizziness, fatigue but some patients manage to work throughout treatment.
Even if myeloma is not detectable after the 4-6 cycles, further treatment is needed because the myeloma will still be there in the bone marrow, either at a tiny active level, or dormant. In UK it is usual to have a stem cell transplant at this point, using cells harvested from the patient themselves at the end of treatment. The method of harvesting means myeloma cells are unlikely to get through, and it is safer for patients than using donor cells. It takes about 2 months to have the harvest & additional testing before having the transplant. All stem cells in the body are destroyed with a high dose of melphalan, a chemotherapy drug, then the patients stem cells are reintroduced. The immune system is extremely compromised for about a fortnight,vans it usually takes about 3 or 4 months to recouperate. Until recently all stem cell transplants were done in hospital, now some are done in flats on hospital campuses with beds available should the patient need it.

The speed at which patients are informed of their progress varies between hospitals. The hospital I am treated at uses an online patient portal so I get to see my results- good and bad-before my haematologist, some within hours of the blood test. It usually takes 3 or 4 days for the electrophoresis test which shows an ‘M spike’ if myeloma is present, to come through. I have always had my test results on the day of my consultation, but in some hospitals they are given a month in arrears.
If the treatment is working (which it usually does), the myeloma level will start reducing straight away. Some patients have a slow and steady decline, others a rapid one.

No one is really going to be able to predict your father’s possible remission time, not only because myeloma is such an individual disease (because there are billions of possible genetic changes), but because the treatment pathway that he is on is so new. It is known to give longer periods of stable disease, remission, than the old 3 drug treatment, which with maintenance after SCT gave an average of 58 months before first relapse.
I hope that your father does well, we really are on the cusp of this disease becoming a chronic, treatable condition. Do not give up hope that your father will be with you for a long time. There are a few patients, without the benefit of modern treatment, who have lived for 20 years. There will be far more who will live long lives now.

[lewisboyParticipant]

Thank you to everyone for your replies, I greatly appreciate it!

[tony642Moderator]

Hi there,

I was diagnosed with MM following fractures of 2 vertebrae, and it came as a complete shock to me. I hade 6 months worth of Velcade, Thalidomide and Dexamethazone which significantly reduced my paraproteins. I had a stem cell transplant in January 2019 and had a bone marrow biopsy to see what effect it had had. There were no detectable signs that the cancer was active. I am now tested every 3 months to identify any changes, but since then the cancer has been inactive.

I know that it will one day return, I just don`t know when, so I am making the most of life while I can. If you need more specific information about treatments that I have experienced, or I can help in any other way, please let me know.

Regards, Tony

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