[kh0305Moderator]

Hi Louise,
Sounds like good news re the kidneys. They wouldn’t have told you all was ok if it wasn’t. Hope all the other tests go smoothly and you get to the bottom of it soon so you can move forward and put your mind at ease. Stay positive xx

[kh0305Moderator]

Hi Martine,
I’m one of the volunteers on the forum and my dad has MM.
Sorry to hear of your diagnosis, but good news that you are the smouldering stage – long may it continue.

You are not alone in finding the vast amount of information confusing. There is a lot to take in. I bombarded my dad’s medical team with questions and my notebook was my best friend to keep notes of results, terms and questions I had during the early stages.

Hopefully it will be many years before your MM progresses, but just to reassure you that dad was diagnosed back in 2013 with very active MM and he is still here, living a fairly normal life aside from the blood tests (and current chemo drugs for his first relapse) and had a 7 year remission period following his first treatment. MM is very treatable and the treatments are moving on all of the time which is all very positive.

Try not to worry too much as hard as that is, as there is a very good chance you won’t need treatment for a while yet and make sure you take good care of yourself xx

[kh0305Moderator]

Hi Louise,
As Tony says, don’t ever feel bad for reaching out. It is a scary time and the waiting is the worst bit!

It will all come together once they have all of the test results and your medical team will be best placed to advise on next steps. I’m afraid Ive not had any experience with beta 1 and 2 being mentioned at diagnosis either, but I imagine like most of the markers, it will all depend on how elevated they are and it may be that they are in manageable levels, especially given the lack of paraproteins.

As hard as it is, please try not to worry too much until you have all of the information to go on and definitely ask your medical team any questions you have as there is a lot of information to take in – I found my notebook was my best friend throughout the initial stages to keep on top of all of the information!

Stay positive xx

[kh0305Moderator]

Hi Louise,
This might be useful for you:

https://www.myeloma.org.uk/wp-content/uploads/2019/11/Myeloma-UK-Tests-and-Investigations-Infoguide.pdf

xx

• This reply was modified 2 years ago by  kh0305.

[kh0305Moderator]

Hi barrettdg
Dad definitely had some loss of appetite as he’s always eaten loads and definitely intake dropped and subsequently saw weight loss. We got him some complan to help maintain his weight when he didn’t feel like eating and tried to go with stronger tasting foods and he was prescribed loperamide to help with the diarrhoea.
He still suffers some gastro side effects but his appetite is definitely back to where it was despite the taste buds still no being quite normal. He has 3 rounds of chemo left so hopefully not too much longer before taste gets back to normal.
Al in all the no appetite/weight loss probably lasted maybe 6 months. Also make sure to flag it to your medical team!
Hoping you feel more like eating again soon. The meds really do a number on your diet 🙁
Take care xx

[kh0305Moderator]

Hi Louise,
So sorry to hear that you’re having to go through all of this. It is never easy and as mariposa says the waiting is the worst part 🙁 at least once you know what you’re dealing with you can start to move forward. I’m very pleased that you have reached out to the forum. As you’ll have seen from the various posts, you are not alone. There are SOOOOO many blood measurements and variations it is a complete minefield and takes some getting your head around! Don’t be afraid to ask your medical team as many questions as you need to. Generally most of them are super helpful and supportive.

Definitely try and avoid the temptation of Dr Google! I did exactly the same as you when dad was diagnosed with MM back in 2013 and it made for some scary reading and mostly turned out to be wrong! I think one of the statistics was saying life expectancy of 2 years when I googled it… well almost ten years on and he’s still here having had 7 years remission and near normal life and just going through his first relapse which initially didn’t respond very well to the treatment but with a change in his meds he is now nearing the end of his chemo cycles and is doing well!

If your diagnosis does turn out to be MM then please remember it is a very treatable disease and things are moving forward all the time. The fact that you have no detectable paraproteins is a good sign too. As hard as it is, try not to worry too much until they confirm – easier said than done I know. Dad was in such a bad way before they found the MM and he is still here – actually away on holiday at the moment!

There is a lot of support on here and the ask the nurse function is very useful for medical questions and has some great articles on there too (and definitely better source of information than google!).
Sending you big hugs xx

[kh0305Moderator]

Hi rr,
The side effects generally do improve over time, but definitely keep your medical team updated with any changes to the side effects as if they get worse there may be things they can do to help with them.
My dad had his SCT back in 2013. It all went well and he had a few side effects, mostly gastrointestinal and change to taste, but the biggest thing was thew fatigue. I’d say it probably took him 6 months post SCT to get near normal energy levels back but he definitely got stronger every day. He was lucky as didn’t suffer from any mucositis as I made him suck ice cubes non-stop throughout his melphalan infusion which definitely did the trick despite his complaining!
I hope it all gos well and the side effects start to ease soon. xx

[kh0305Moderator]

Hi Mariposa,
Sorry to hear about the Parkinson’s but hopefully the drugs will help with the symptoms. I’m glad to hear that you are still remanning upbeat and positive and I’m sure you will have a fabulous holiday and Christmas with your positive outlook on life. Here’s to a better year ahead. Take care of yourself xx

[kh0305Moderator]

Hi Liz,
Really good that you have a supportive and informative team at the hospital. That really does make such a difference as you go through everything. Dad’s team have been very helpful when I’ve bombarded them with questions over the years and as you say, the information from others on here helps to then put it into ‘real life’ situations.
Hope everything goes well for you xx

[kh0305Moderator]

Hi Robert,
My dad is on that currently following a 7 year remission period after SCT.
He initially was put on Dvd when he relapsed in late 2020, but that gave him horrendous side effects and didn’t work for him to bring the MM under control so he was put on to IRD in February this year. He has been so much better on the IRD than Dvd with fewer/less severe side effects – we have our dad back which is lovely. The main side effects he has are lethargy, mild neuropathy & gastro symptoms and the usual ups and downs associated with dex (plus the messing up of the sleep patterns it brings) and lately he has had some issues with nose bleeds/bleeding gums (likely due to warfarin) and swollen ankles. But overall he is much more his olde self and even though the list of side effects seems long they are very manageable. Of course, everyone responds differently as I know lots of people do amazingly on Dvd which dad didn’t, but we have been really pleased with this response to the IRD combo and all his blood results are heading in the right direction. He has 3 cycles left to go.
Hope this helps xx

[kh0305Moderator]

Hi Cloudspotter,
Sorry to hear of the problems you are experiencing. Hearing that the MGUS was progressing was probably the last thing you wanted to hear 🙁 but despite this you’re keeping very positive 🙂
As mulberry has mentioned in her reply, there can be some neuropathy side effects from some of the chemo drugs used. Dad didn’t really suffer much at all first time round and the mild symptoms he had disappeared after treatment but with his third line combo currently he is experiencing more significant neuropathy though still not the effect for it to be enough of a problem in day to day life to warrant reducing his meds yet. Again, we expect the issues he does have to disappear once treatment finishes (3 more cycles…). I can understand your reluctance over chemo with the side effects but following his treatments, dad has lived a virtually normal life in his remission period so the hope would be that longer term you would get the MM under control and not suffer any long term side effects. Good luck with everything xx

[kh0305Moderator]

Hi Mariposa,
Pleased to hear the MGUS result. Keeping my fingers crossed for it to stay that way for you for a very long time xx

[kh0305Moderator]

Hi ac
Good to hear you are back home and recovering well. Hope you are feeling much more like yourself again soon xx

[kh0305Moderator]

Hi Heathermullen,
Sorry to hear that the PP and LCs are starting to creep up again. Hoping the scan gives you some positive news that no further damage has occurred. My dad is on lopermide for his diarrhoea – I’m not sure if that’s what you have been told about or not? Always worth flagging issues with your medical team to see if there’s anything that can help rather than suffering with it as you say, there are enough pains with the MM itself without anything else on top! Hope it improves soon for you xx

[kh0305Moderator]

Hi Dave,
Glad to hear you are feeling better now. Dex does manage to wipe you out quite well unfortunately! Hope the trial goes well for you and as you say, can always withdraw if you feel it isn’t working for you, but good to have the option especially as treatments seem to move on so quickly in the world of MM xx

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