Started Treatment of Muliple Myeloma

[Trish]

Hi I just wanted to let you know I have started my treatment for MM on Monday.

After a marathon 7 hours in the hospital I was allowed home. The 2 injections were a bit of a shock more like extended bee stings into the stomach. The cup full of 27 drugs to take all at once, also a shock (I wasn’t made aware of these beforehand).

The poor nurses were rushed off their feet and kept apologising to me because there was a problem with my prescription etc so just more delays.

My partner wasn’t allowed with me so was worried because we were told it would only take 3 hours.

Anyway I came home exhausted with a pounding headache.

Only 4 hours sleep the first night. I was literally wide awake at 2am. Then I started on another 27 tablets (steroids etc) and had so much energy so decided to blitz the house cleaning out cupboards the works! This went on for 3 days but then the side effects started, low temperature, headaches, night sweats then yesterday I lost vision in both eyes, like a double migraine! I panicked!

I managed to contact my CNS who reassured me it was the side effect of the drugs because I had gone back to bed and slept and the vision came back.

I continued with my manic cleaning regime yesterday which was worrying my other half (I’m not usually this manic) and eventually stopped (crashed) at 9pm.

Well today, serves me right, I have well and truly crashed. I woke up exhausted. I had to have bloods taken at my Drs surgery ready for treatment again on Monday so my other half took me. I came home and went straight to bed and have now just woken up after 3 hours sleep, still got a fuzzy head but I am listening to my body and I will rest I promise.

What a whirlwind of a start to my journey. I have made a date with my CNS on Monday because I want to know exactly what is in store for me. I feel stronger now to absorb all the information which has been too overwhelming for me to take in up til now.she asked me if I wanted sugar coating or honesty and I said I want to know everything and the worse case scenario. I have had so many nasty surprises so far I just need to know what sort of ride I’m in for.

I will be starting my STC treatment in January which is a relief because I was down for it over Xmas so at least I will have Xmas with my family. There are some positives to look forward to. x

[Erica]

@Trish all I can do is re-iterate your words ‘what a whirlwind start to your journey’.
However I have to admit admit to having a good blitz before going into hospital, I cannot help myself, however I have never included cleaning out cupboards at that time as well.
I also then know the crashing, so, so tired and not being able to sleep because I am too hyper.
I am so glad that you have a great CNS, please let us know how the meeting goes on Monday. Yes, ask every question you have on your mind, I always write them down first so I know that I have covered everything.
Please keep that promise and rest when you need to.
Look after and be very kind to yourself and please keep posting. xxx

[helenfwallace]

Hi @Trish

I think you have been very brave with your treatment and it’s side effects. If I lost my sight, even temporarily, I would totally freak out. I cant even imagine taking 27 tablets in one go. Making an appointment with the nurse is really the right thing to do, then you know what to expect and can prepare yourself. Thank you for sharing your experience with us. Take care of yourself,
Helen

[Trish]

Hi Helen

It’s been a journey I’m not going to lie but I am at the end of week one now and feel as though I have ‘ridden the storm’ so to speak.

I am not one to ring anyone if I really don’t have to as I totally understand how busy everyone is. I feel quite proud of myself (did I really say that?) how I have got through this first week. Hopefully week 2 will continue pretty much the same so I will be prepared as much as I can be. The only difference is the bone strengthening drug plus my flu jab at the end of the week (as advised by my CNS) .

Onwards and upwards even though I’ve only had 4 hrs sleep and am wide awake x

[Erica]

Oh @Trish I know what you mean I am also not one to ‘bother’ a professional but that is what they are there for and firstly they need to know exactly what is going on with you if they are treating you and secondly the more information you have then the less you will need to contact them about in the future.
Yes, be really proud of yourself, pat on the back and hug time.
It sounds as if your thoughts and feelings are whirring around inside you if you are wide awake after 4hrs sleep and in the words of the Mamas and Papas (other versions are available) ‘the darkest hour is just before dawn’
Keep up those affirmations
xxxx

[2DB]

Hi @Trish

It will be the steroids giving you sleepless nights and blitzing the house you will feel like you can achieve anything
You will then get withdrawal from steroids which can make you feel right down in the dumps feeling like crying for no reason repeat
You don’t say which regime you are on.

If your having velcade daratumumab Dex this regime will make you light sensitive and fuzzy/dizzy head
You need to keep letting your team know about side effects
The nurses will ask you questions before giving velcade as it can cause neuropathy so always be honest and don’t be afraid to call your helpline they are used to people calling and would rather you did that than self access

You can become poorly with treatments due to low neutrophils etc so it’s always best to catch anything at the beginning rather than 2/3/4 days later because you don’t want to bother the nurses
(I learnt that lesson the hard way)

Yes the bag of meds you get is massive

[Trish]

Hi 2DB

Yes I am on those dugs plus another also.

Thank you so much for reassuring me I’m not losing the plot as I have been so emotional it’s unreal. No 2 days are the same but I am getting there.

My second treatment is tomorrow and I am having a meeting with my CNS to discuss my side effects etc which I am managing (now I know it’s the norm to a degree) it’s just having to adjust to how you feel on a daily basis.

If I am honest (and I usually am) all things considered it’s not been as bad as I thought it would be, however I expect things have a habit of changing don’t they and I am prepared for it if and when that happens…… fingers crossed.

I am so grateful to have found this group on here as everyone is so supportive and helpful. I really do appreciate it thank you x

[2DB]

Hi @trish
What other drug is it lenlidamide or thalidomide
I’m familiar with thalidomide I haven’t had lenlidamide

I have found dara very tolerable
The culprits are velcade especially and dex

The nurses will fill in a questionnaire each time you have velcade
At cycle 4 I had to have my velcade reduced as I had neurotoxicity so it’s REALLY important you relay anything that doesn’t feel normal

I am happy to buddy up with you if you would like that

[Trish]

Hi @Erica
Thank you so much, I’m glad I’m not the only OCD person on here! .

Yes I have written everything down, I have to my memory is dreadful!

I have also got another problem and have now booked an urgent appointment for Tuesday morning with my optician as my vision is getting worse and I have read that the treatment can affect your eyesight or at worst the myeloma has spread there! Trying not to panic just yet but it’s so difficult with all the other problems and hoops I’ve had to jump through so far!

I will let you know how I get on and thanks again x

[Trish]

Hi @2DB

Yes thalidomide at night.

Being a buddy sounds good what does that entail please, you may regret it mind as I am a right worry fish at the moment. x

[Erica]

Hi @Trish that must be a worry as you are so aware of it as we are using our vision all the time.
As usual tell your optician about your diagnosis and treatment and your medical team about what you are experiencing and what the optician has said.
Fingers and toes crossed for you and yes, please do let us know how you get on.
Be very kind to yourself

[2DB]

@Trish

How did it go at the opticians

Re Buddy I was going to private message you but I’m not able too

[Trish]

Hi @2DB

Good news in a way that it’s not spread to my eyes however the gell bit at the back of my eyes have completely separated from the back of my eyes which is therefore distorting my vision which they can correct with glasses.
So a nice pair of glasses is on the cards next week.

He also said the chemo will be affecting the vision too but he will be keeping a close eye on me now pardon the pun.

Btw any good advice for constipation? I haven’t been for a week now and it’s really painful. I have tried all the foods going and drinking loads of water too. I’ve sent my OH to get prune juice now! x

Ps I don’t know how you can private message me what do I need to do? I’m a techno phobe!

[Trish]

Hi @Erica

Thank you for your message yes I took my list of medication with me to the opticians and he’s recorded everything on the system for me. There is a problem with my eyes but it’s not myeloma and will be corrected with glasses. He also said that chemo will cause the vision to become blurred too so that’s one to watch really.

New glasses it is now then! That’s going to be strange getting used to but one less thing to worry about thankfully x

[2DB]

The best way to avoid constipation is to take movicol or whatever they give you in the bag of meds at the start of treatment
I made the mistake of not taking it because I was moving ok
You will probably need a bit more help than prunes
I found with constipation the food I was eating was sitting on top of the blockage causing sickness and pain

Drinking plenty of water at the start of treatment

If you imagine it’s going to take a lot of liquid to soften hard stools
I recall senna recommended

I would just give your team a ring and tell them about constipation
They may tell you to up the movicol

The bowel slows up on treatment and from opioids etc

Steroids also cause eye problems I have a cataract in my right eye from steroids

None of us can private message at the moment it’s being looked into

[Erica]

Hi @Trish Glad the news was good .I can foresee a really snazzy pair of glasses on the cards and yes. they might well take a while to get used to.
Your optician seems on the ball though.
As for constipation I take Lactulose.
I have lasting vivid nightmares @2DB of my mother boiling Senna Pods and when the liquid cooled down the pods were floating on the top in a scummy type liquid. I had to drink the liquid, minus the pods. It does show that I must have been prone to constipation from a very young age.
Don’t worry @Trish and @2DB you can now get Senna in tablet form. over the counter.
I find constipation can really hurt and also make me feel yukky.
@Trish please do feel free to let us know about developments and please do keep drinking the water.
Be kind to yourself

[Trish]

Hi @2DB

I was not given any medication from my hospital (it’s absolutely useless tbh) re constipation. My OH has come back from the chemist with lactulose as recommended by the pharmacist and organic prune juice which I have taken. I’ve eaten a whole bar of rich dark chocolate too which usually works.

You are right everything I’m eating is just stacking on top of the blockage now and is painful and making me feel sick. My worst nightmare is throwing up!

I’m going to message the CNS nurse to ask for a prescription for movicol or something stronger. Always something isn’t there?

Thanks for your recommendations too I will give them a go too. X

[Trish]

Thanks @Erica. I’ve resorted to massaging my tummy now, scared stiff of being sick though (such a baby I know!). I’ve taken the lactulose (big dose) so a waiting game now. Maybe I should do sit ups (joking!). I feel like I’m 6 months pregnant again! Might get some senna tablets tomorrow too.

Oh my so much to look forward to in the months ahead isn’t there NOT x

[2DB]

I have a fear of being sick I will do anything! Not to be as once I start I can’t stop
I have a hyper emesis the part of the brain that controls sickness

Hopefully the lactulose is working though it might take a bit of time to work through the build up as that will be dry and hard not being exposed to liquid if that makes sense

There is a section on constipation from myeloma uk

Myeloma-UK-Gastrointestinal-disturbances-Infosheet.pdf

[Trish]

Hi @2DB

Please don’t laugh but I have been on the loo for 1 1/2 hours and can’t stop! I managed to go last night too. I will spare you the details but suffice to say I am no longer constipated and whilst that is an amazing relief I think I may need to reduce my lactulose dose and prune juice a bit lol. Thank you for sending me this information I shall have a read up on it. Interesting day ahead of me I think good job we can laugh at ourselves ay??? xxx