Not sure if I am in the right section as this is the first time of posting. My partner was diagnosed last May with Multiple Myeloma, he went through a course of treatment followed by a stem cell transplant just before Christmas. All the way through this terrible process we were told the end goal was to hopefully achieve remission after the stem cell transplant and bar check up appointments get our lifes back for a period of time until it returns. My partner reached the 100 days point a few weeks ago and had a bone marrow biopsy. We had an appointment with the doctor on day 99 and was informed he would now go onto another lot of treatment, which would depend upon the results of the biopsy. There were 4 treatment options (he has been part of a trial) but basically we are back to another 4 months of treatments and which one he would be on would be randomly selected. This has all come as a bit of a shock to us, we had been building up to gettting past the stem cell transplant and rejoining the real world and hopefully take some of the trips we had planned pre Covid and start ticking off some things from the bucket list. Sorry this is a long post to get to my point to ask if this has been other peoples experience. The doctor told us that studies have found by continuing rounds of treatment greater life expectancy is achieved. We did discuss for her that for us quality was more important than quantity. When we asked about how long life expectancy could be extended they couldn’t give us any real data. We feel like the rug has been pulled from under us again and we dont know where to go from here. When we have previously asked about alternative treatments we were told if he didn’t go ahead with the stem cell transplant that we would be on our own! What treatment have others had following the stem cell transplant? We were told his biopsy results were good and his count was 10.5 and normal is up to 19.
Hi there, i had my stem cell transplant jan last year and once i got 100 days past i started on lenalidomide maintenence therapy. Its a tablet taken for 3 weeks then a week off after which bloods are taken and then a monthly meeting with the consultant. If all is ok i go on another cycle. I get monthly zometa infusions and i have a lot of antibiotics and other preventative meds to take daily. i have to accept this is it and how it will be until it returns. Generally i feel ok and get on with life as normal, its only coming up to monthly meetings the “fear” returns. This is as good as i will ever be again so i have to make the most of it, your husband will fall into a new normal too and trips etc will be a part of it again for a while x
Hi @Barkingdog a great big welcome and thanks for your post, the unknown future is so scary isn’t it.
@Bitsy has shared their experiences which is really useful.
Only the medical team treating your partner can really give their guidance as they know your partners whole medical history.
You could always request a 2nd opinion either through the NHS or at your expense or any insurance policy you might have privately.
Actually all anybody in this world has is is the moment if you think about it although I thought I had my whole life mapped out before my diagnosis
Please do let us know how you get on and the main thing is you both look after yourself.
I look forward to hearing from others with their experiences
Thank Bitsy
I feel like the hospital has only drip fed us information about ongoing treatment which has led to so much disappointment on our side. We were told not to go to busy places like cinemas, theatres, restaurants etc, we have missed the wedding of very dear friends. We desperately wanted to get away from this god awful wet weather and get some sun but have been told not to. We had planned to book a cottage next week and travel up north to see from friends, but he is going straight onto treatment next week. The lenalidomide makes his taste buds go funny and the steroids mean is high as a kite one day and barely able to stay awake and function the next day, so at the moment I am struggling to see how life can every have any normality to it.
It changes everything for sure, i always have low neutrophils and have also been told no crowds, what can we do? Its still very early for you both and i know how frustrating everything is, all i can tell you is i had to scale back goals and find happiness in the smaller things. It will get better i promise x
Thank you Erica.
I was interested to hear what other peoples experience has been once reaching remission, I wasn’t asking for medical advice. We had asked about private treatment and was told its not available at this hospital.
Sorry I dont quiet understand your point “is the moment” if you mean you have to live in the moment, then that is what we are trying to do but being told all those things we want to do, that we shouldnt. We have so limited time and cant live in that time we have. Sorry getting very angry again. When people say the main thing is to look after yourself, whats the bloody point when your life has imploded.
ive personally benefitted from seeing a psychologist, your husband can get referred to a macmillan centre for this, maybe its something that could be useful for both of you?, we all need to vent our frustration at this very unfair set of circumstances, its not for everyone and it did take time to see the rewards of it.
Oh, @Barkingdog I am so sorry if I have made you angry, I do not blame you. it is not fair.
What I meant by ’ all we have is the moment’. I certainly did not foresee being in isolation for nearly 3 yrs during Covid times.
Please do keep posting as I look forward to hearing more about you both.
Yes, @Bitsy I also benefitted from counselling to come to terms with my diagnosis.
Hi there
Is your hubby part of a trial?
What treatment did he have prior to transplant?
Apologies for stating the obvious hubby has had his immune system basically destroyed and he is now growing a new immune system just like a baby would so he will still be susceptible not only to covid but any illness circulating so caution for now is key to keeping him well and out of hospital.
He will need to be re vaccinated with baby jabs.
He won’t be able to have any live vaccines and he won’t be able to have MMR and measles is about at the moment.
I was diagnosed 7 years ago with myeloma
I had my first transplant in 2017 with no maintenance chemo (it wasn’t a thing then)
I achieved a good partial response PP 4/5 light chains 66 for 5 years and then relapsed in 2021
I opted for Dara/velcade/Dex as my second line treatment and had my second transplant in 2022 to help my transplant to respond deeper PP and light chains less than 2 I have dara/Dex maintenance every 4 weeks which is giving me a very good partial response until my next relapse. I have been advised that the second transplant may not last as long as my first.
Along with that I’m permanently immunocompromised so I’m high risk of hospitalisation should I contract any illness.
For that reason I’m choosing to still shield and I risk assess everything and I’m happy to do that.
Myeloma is individual to each of us so my situation will be different to yours.
I would advocate counselling as living with a life changing illness brings about many emotions and having to change how you live.
Those feelings are very normal and having someone to talk them through is helpful
It took 18 months of counselling for me I was diagnosed with PTSD due to a life threatening illness. I was given 6 months at diagnosis as I was not responding to chemo and had to have salvage chemo which worked enough to get to have my first transplant
Hi
Thank you for responding and detailing your treatment. I am interested to hear that you did not have maintenance chemo. His treatment was presented to us to be treatment free after the transplant. He had the stem cell transplant just before Christmas, came home a week before Christmas. Originally the plan was to do it over Christmas, but once I told them how my father died on the very same ward my partner is having treatment on,and that he died on the 27th Dec following some very inconsistent care due to Christmas holidays, they agreed to bring the date forward a bit.
His treatment started with 4 3 week cycles of chemo, which he was responding to and his count came down from 4200 to 200. He then had a break before they started the treatment for the stem cell harvest and went into hospital early Nov 23 for the stem cell transplant. Ironically in the time between his treatment when he was feeling well and OK I was hospitalised with bad bacteria in my blood, which only after the event was I told I had sepsis.
He is on a trial and his treatment is randomly selected and so he will be on Bortezomib, Lenalidomide, Dexamethansane and Isatuximab for 4 cycles. We have not been told the results of the bone marrow biopsy and we dont know when we will next will see a doctor, we presume after the first cycle but we dont as yet have any appointments. So he will be going in for weekly
appointments, which leave him high as a kite an unable to sleep for about 24 hours followed by crashing and burning the day after. We have been told it is unlikely he will have another transplant as they are moving away from that as a treatment. He does not have any stored cells if he does need another transplant.
What we are really struggling with is the way it was put to us that following the transplant he would be treatment free and that the average was 3 years before the myeloma returns, but after a year of treatment we find we are back to square 1. There have been no discussions of alternatives, we have been told he can withdraw from the trials but not what would happen then. We are both 56, so as you can imagine feel a bit robbed of time, I am realistic enough to understand he may not even reach retirement age.
Hi again
I was 49 when diagnosed I’m now 56
I don’t think about retirement anymore I think about living instead
It maybe that you have to tweak this new myeloma life to enjoy different things or you may carry on as you were
There is no right of wrong way but don’t be robbed of living life with hubby.
While your feeling robbed, angry it will be steal your serenity
I can tell from the words you use how this is affecting you and I can empathise.
What myeloma has taught me is life is very precious and each day I wake up I am grateful to be with my kids. I’m a single parent and they are my world.
Regarding my first transplant there was no maintenance chemo available at the time
Im aware that in the trials on going that there is some sort of maintenance chemo after Stem cell transplant.
Lenalidamide seems to be the go too.
Myeloma UK welcomes NICE approval for the first maintenance treatment for myeloma - Myeloma UK.
Regarding my first transplant in 2017 there was no option for maintenance chemo
Thankfully treatments are advancing
Have you got the signed paperwork for the trial
Does it state in there that there will be maintenance chemo?
I’m guessing biopsy will be done 100 days that will be looking at minimal residue disease (the amount of myeloma cells remaining after treatment)?
If you feel that you have been misled then I suggest making a complaint to PALS
This may help to get what’s bothering you down on paper/email a bit of therapy so they say
I just wanted to add
If hubby doesn’t want to have more chemo that’s his choice and to say what he wants to do
Section 4 of the nhs constitution is about being patient led
Explore all his options before finally deciding
Hi 2DB
Thank you for the information Re PALS, I may look into but as my Dad used to say “don’t bite the hand that feeds you”. I appreciate that the hospital are now saying this is the best way forward and that this treatment was not available before but for us naively we had pinned our hopes on the 100 days of the stem cell transplant being over and start trying to fit 20 years worth of living into 3 or how ever long before it returns. When your being told 3 years is the average before it returns, to take another 4 months of that away for further treatment has been a bitter pill to swallow.
I am glad you have found some peace and serenity and that you have your children to live for. I sincerely hope that you many more years ahead to share with them.
Maintenance Chemo was not part of the trial that he signed up to. He was asked to sign new paperwork for this. He had the bone marrow biopsy after 100 days, but we haven’t seen anyone to be told the results of this. The doctor we did see was just tasked with going through the consent form and getting him to sign.
Hi @Barkingdog. I had an STC 2 1/2 years ago and have been on lenalidamide for the last 2 years, with a monthly Zolendronate drip which has just finished, the same as @Bitsy .I understand that this is the standard maintenance treatment for most people with myeloma. It must be difficult being part of a trial but normally len is life long afterwards in whatever combination. I too was under the impression that life returned to normal after the Stem cell transplant but unfortunately a side effect of the len is to make you immunocompromised. Mine is moderate with neutraphiles hovering around 1. It’s all about risk management. I’m risk averse so I wear a mask if I go to to a shop as does my partner. I don’t go to crowded places. We have groceries delivered and don’t meet up with anyone who’s ill. I wouldn’t want to sit on
a plane due to the recirculated air, neither would I feel comfortable going out of the country as I want to be
near a UK hospital should I develop an infection, which has happened on one occasion. I remember feeling desolate on being diagnosed, reading the horror stories on Google but people can live for many years with myeloma. 14% of people dont have the myeloma return. Just remember that new treatments are constantly being researched so hang in there, things do go back to a new normal over time.
Wow, so nobody told us that Lenalidamide makes you immune compromised forever or that he would be on it forever! Jesus this just takes it to a whole new level of not living.
You are on lenalidomide as long as you tolerate it or until disease progression.
Having Myeloma for me is all the psychology of it, the constant worrying about it coming back even though im in remission now. Everyone is different with the meds, most people tolerate it well. personally if it prolongs my life i dont mind wearing a mask and being careful, whats the alternative?
Hi @Lyn99,
We appreciate you sharing this with us all & we value your experience of life after transplant- i don’t doubt it well help so many others feel less alone.
Reducing risk and weighing out what you are able to take on in life is certainly something we encourage- but don’t underestimate how difficult that might be. Finding a balance that positively impacts your mental health yet also protects your physical health cannot be easy.
Should you ever need a soundboard or wish to talk things through do know our support team are very much here for you- 0808 2080 888.
Take good care, Lauran
I have used PALS a few times and found them helpful
Rather than a complaint use concern.
You should never get less favourable treatment for speaking up.
I have had cause to complain be concerned about 2 consultants and non mask wearing in the unit and follow up letters.
I’m sorry to see that you have pinned your hopes that 100 days somehow means you’re over a stem cell transplant and life gets back to normal.
Unfortunately that’s not how it works.
Who led you to believe this? It’s very irresponsible.
I’m going to link you an info guide from myeloma uk pages 29 onwards maybe very helpful for you
Hi @Barkingdog i just wanted to clarify that lenalidamide isn’t chemotherapy it’s an immunomodulatory drug and is usually well tolerated.
@2DB has given you a good info link which will be very useful. I’m not sure if you know but when they harvest stem cells for the Stem cell transplant they take enough for 2 transplants so if it does come back you can normally have another as long as you’re fit enough. There are then more options for treatment after that.
Your husband will also need all his childhood vaccinations again after 6 months so this will protect him against a lot of illnesses.
There are people on this forum that have been myeloma free for 10 /15yrs so the 4yrs official data that Doctors tell you isn’t necessarily always the case. The disease varies so much from person to person.
This forum is great for connecting with people for support. I also use the Myeloma Health Tree organisation in America. They have a very upbeat approach to the disease and have really useful videos on many subjects given by experts. I found them very positive and it gave me a boost in the early days when I felt broken.
Hi it was interesting to read your message.
am in a very similar situation I was diagnosed with multiple myeloma a year ago and had a stem cell transplant in December.
After my last bone marrow I was told that they were very pleased with the outcome but I still had a small number of cells and would have to carry on with one of the four treatments that would be randomly sorted by a computer( I am on a trial).
This came out as the highest treatment and am now back at the hospital every week.
I was looking forward to more normality and was very upset.
I had my first treatment and it was a full day. I know I should feel lucky to be having this but now feel I have no quality of life.