Maintenance treatment

Hi Tess123,

You have clearly been through so much: a myeloma diagnosis, treatment that 'went wrong' (except that it worked), and now what sounds like some lousy medical support.

What maintenance treatment are you getting? I am concerned about your cancelled appointments (presumably leading to delayed maintenance). Also being told to go see your GP: myeloma is well beyond their capabilities!

I haven't had these issues. Mine have been lower level: at my last appointment I was being prescribed Zometa (not appropriate and possibly harmful after years in remission), not being told that I was supposed to see my consultant etc. I complained and they have hopefully listened.

Whereabouts are you? Can you go see an alternative haematologist?

Hi there Tess,

This has all clearly been a very upsetting experience for you. It must be very concerning to feel you are not getting proper care with such a disease.

I'm not sure how you are being left to fend for yourself and what that means in practice. As a myeloma patient we can’t really affect our status by how we live (within reason and also other than doing our best to avoid infections). While you may not speak directly to a care team as regularly as you previously did this should not mean you are on your own. How long ago was your SCT? How regularly do you have blood tests or reviews? Without wishing to add worry I would have thought these are more important than self reporting symptoms. After all what symptoms are you expected to be looking out for. 

I too am on a low maintenance dose due to an intolerance of lenalidomide but I was recently told not to be overly concerned by this as there is a view that the same dose isn’t appropriate for everyone - age, sex, weight all also play a part. 

we all have an individual journey and individual treatment programmes so it’ll be hard to find someone with the same experiences as you. I did go through a successful SCT so perhaps my review programme is different from yours for that reason. I can not say what “should” be your programme. 

I recently called Blood Cancer UK with a question and spoke to an extremely helpful nurse who was the person who answered my call. She didn’t have the answers but promised to dig around amongst colleagues for them. I’ve not had a response yet, so whether it will help or not I don’t know. But I would strongly suggest speaking to a health professional more expert outside of this forum. Perhaps either call MacMillan or Blood Cancer UK, who are closer to the particulars of our journeys.

I hope you get some reassurance. Being stressed mentally certainly doesn’t help your overall situation. 

Hi Tess123    sounds like a tough situation,   was the maintenance drug Lenolidamde ?    i was on this after SCT  and had to come off it due to severe  skin reaction,  and  have been on nothing for 2 years now,  and still in Remmision,      everyone is  different,  and if my  health concerns are not MM   related,    i was told  also to go to the GP,   which i do and they are brilliant!         i guess like Chicken2  my questions to you are about   blood tests  for  checks at least every  3 months,   my GP  take the blood samples submit to testing at the  Treatment hospital  ( Worcester uK)  and then a follow up with  the Haematologist,  which is now only by phone.

i guess the feeling of "  abandonment "  when you and all of us are still feeling vulnerable,     do you reach out to Maggie's centre or any other cancer support groups   local to you,  as sometimes a   face to face shared discussion can make you feel more included and   heard,     sometimes i did feel that i  felt like i was shouting into the wind,  but now  i feel  in a good place,     doing things the best i can,    grandkids,   swimming,    walking the dog,    sports on TV and even going to events now,   which 2 years ago,  i  did not think i would  ever be able to do.

please reach out to local groups  most hospitals and GP   surgieries have them on the notice boards 

Kevin

Thank you for reading and responding to my post. I was very low when I wrote it so may not have explained my circumstances very well.

My Stem Cell Harvest failed miserably despite there best efforts to boost the harvest. I did not produce enough cells to go ahead with the transplant. I had been in hospital a week with severe upset tummy and was not well at all. They said they would try again but again I ended up in hospital with tummy problems which included bleeding. They said it was diverticulitis and colitis.  That's when they took me off the trial. 

I am now on fortnightly Daratumumab. Daily Lenalidomide for 21days out of 28 and Dexamethasone weekly.  My bloods are done fortnightly at the moment to make sure I can have the Daratumumab.

Having to help myself is mostly about the Neuropathy that I have. When I told them they said hopefully it will improve but go to your GP.  She prescribed more Gabapentin. Already got brain fog. Dont need it to get any worse. I had  polio in my right leg as a baby so that is not helping. I decided to ask this group for help and it was suggested I use vitamins B. I also was recommended to use a lotion and massage. These have helped with the pain and numbness to some extent. I have also asked to be referred to physio to try build up my muscles so weight bearing is not as painful. Still on morphine from when my back fractured back in November.

• I know deep down they are doing all they can for me. Just get very down sometimes.  Want to be back to me.

Hi Tess,

I am relieved to hear you are being regularly monitored for your bloods. That had me concerned. It does sound like they are doing as best they can for you for the cancer treatment.

its a shame about the cell harvest. I needed a fair bit of boosting and spent the night before seriously unwell from the final boost. Which I graphically illustrated to the consultant the next morning exactly when he asked how I was .

I have had only minor neuropathy so have no experience of that to comment on. It’s nausea that’s been by my big issue all along.

i can empathise though with the back pain. I have 3 fractures and it took a while to get my morphine up to a level that actually helps. One of my doctors refers to it as my “enabler”. Which is exactly right. I have physio from the NHS - I wanted it to be part of a team that talked to each other. It took a lot of pushing and I got my MacMillan team to advocate for me to push me up the list. 

Physio has been invaluable. I follow it faithfully, have never missed a day I’m due in over a year and this week got back on my road bike outside (just for a short ride) - with spinal fractures. 15 months ago I couldn’t be in a car going over a pot hole without yelping. My pain is now from the muscles to the side of my spine that are compensating for the work the spine was doing. And I have new exercises to work on that. Shout as loud as you can for physio. When I first asked in hospital I got sent occupational health instead who told me how to adapt my house and to bore holes in my bathroom for grab rails. I ignored them. I did use toilet seat risers for a while and chair risers. They helped a lot and were lent to me by my local OH unit, along with a wheelchair which I initially really needed.

we all get down, it’s entirely natural - don’t beat yourself up. It’s a sh*t hand but you’re still here and feisty enough to have a moan!

Thank you. 

I am looking forward to going to physio. Never thought i would say those words. Hopefully it will strengthen me enough to be able to lift something more than a cuppa. 

I am 69 now so I know I will never be back to my pre cancer self but I still want to be involved in family life and some NEW normality. 

Wishing you ALL the very best with your journeys. Thank you all so much for helping me get through this. 

You’re welcome and thank you.

A bit of determination and physio work and you might be amazed at yourself. I’m not much younger than you. I still very much need my support, there’s still a lot of limitations and plenty bad days and tears in the mix but day by day….

Be kind to yourself above all.

Hi Tess123,

As someone who is further ahead in the process, strength can be rebuilt.

Pre-cancer, I was a gym regular since 2004 (give or take a Covid lockdown or two). I lost a huge amount of muscle during treatment.

I didn't have in person physio, but got advice from a specialist physiotherapist.

During remission, I have rebuilt myself, working on cardio and resistance training. It took every iota of my willpower, but I am back at my previous levels of fitness (except for running - I have started working on that in recent weeks).

All the best to you!