[MikejanulewiczParticipant]

Hi Pat

I’m so very sorry that it’s not helping for David.
I can’t get my head around why they don’t allow dara much earlier, cost I suppose??!!

I hope you get a hospice bed very soon. I know that hospices are fantastic places with very caring staff. They help both the individual patient and family and friends. Will it be close for you to visit?

Pat, look after both of yourselves (if that makes sense!)

Mike. Xx

[MikejanulewiczParticipant]

Sorry- wrong button!!!

My bone pain is 90% better and no side effect except steroid poor sleep for 3 days.

Hope everyone is ok.

Mike

[MikejanulewiczParticipant]

Ok

I think we’ve now got a team!! With both of your husbands and Tom and myself—-team Daratumumab.!

Tomorrow is my 6th treatment so still weekly, but hospital habit pretty smooth now—- I go in at 9am, given the premeds, start getting sleepy, fall asleep at start of infusion, wake up a couple of hours later. Chat to my fellow chemo users and off home about 4pm.

Even after this small number I feel so much better. My back is not painful now ( I was on small dose of morphine 3 months ago). No side effects. And feeling pretty normal. Much better than ANYTHING I’ve been on in the last 7 years!
The goood news last week was pp started to fall, just a little but still early days. So hang on in there everyone and I hope your Daratumumab journey is as smooth as mine has been.

Also, the info from my consultant isn’t that this is last line treatment. There is other stuff out there that is readily prescribavle and also trials and new treatments in the pipeline. So please everyone remain as hopeful as possible.

A merry Xmas to all.

Mike. Xx

[MikejanulewiczParticipant]

Ok

I think we’ve now got a team!! With both of your husbands and Tom and myself—-team Daratumumab.!

Tomorrow is my 6th treatment so still weekly, but hospital habit pretty smooth now—- I go in at 9am, given the premeds, start getting sleepy, fall asleep at start of infusion, wake up a couple of hours later. Chat to my fellow chemo users and off home about 4pm.

Even after this small number I feel so much better. My back is not painful now ( I was on small dose of morphine 3 months ago). No side effects. And feeling pretty normal. Much better than ANYTHING I’ve been on in the last 7 years!
The goood news last week was pp started to fall, just a little but still early days. So hang on in there everyone and I hope your Daratumumab journey is as smooth as mine has been.

Also, the info from my consultant isn’t that this is last line treatment. There is other stuff out there that is readily prescribavle and also trials and new treatments in the pipeline. So please everyone remain as hopeful as possible.

A merry Xmas to all.

Mike. Xx

[MikejanulewiczParticipant]

Hi Pat
Good luck with the special request. Obviously I don’t know how effective it is yet but apart from the length of giving it, I’ve had no other side effects at all—- just Dex sleeplessness!!
You are very right that we are all different.

Tom, my extra drugs are
For two days after the infusion, 2x2mg of Dex
And continuously, twice daily antiviral.
I’ve not been prescribed anti nauseants or antibiotics.

Fingers crossed for everyone.

Mike.

[MikejanulewiczParticipant]

Good that you’ve got a date Tom.
And hope all goes well.

I had my second dara today (yesterday)
Only 8 to 4pm today so much better. And next week should be quicker and I wasn’t as sleepy because of antihistamines so I will drive in myself.
No side effects during at all but just the sleeplessness cos of the Dex tonight. Otherwise simple!!!! Just hope it works. I think I’m nit going to know for a couple of months- is that what you’ve been told?

Also – a question for you. I’m a bit worried that fourth relapse sounds quite a lot. Do you know what/ how many relapses are “normal” and what is likely next treatments after this. I get the impression we go back to “older” drugs again.

Take care

Mike

[MikejanulewiczParticipant]

Hi Pat
Sorry for the late reply.
I’m sorry about David’s relapse. My understanding is that the nice guidelines are specifically for fourth relapse.
But—- don’t give up hope. I asked about this scenario to prof Cooke in Leeds when I was last in clinic. His response was there are possible ways around. Those are trials and direct to drug company to create possible new trials. If you’re not in a myeloma only clinic ask for a second opinion or to be transferred. The possibility of linking into an “off licence” medication via a general haematology clinic is much less likely.
Apparently there are ways!! But unlikely buy just asking the nhs directly as the “pathways” have to be followed.

Mike

[MikejanulewiczParticipant]

Hi tom

Yep I was told I’d relapsed for Firth time a few weeks ago. I had some extra back pain and thought another vertebra might have gone so they did do a pet scan. It did show a buggered back but nothing new!!

I’m looked after by the myeloma team at st James in Leeds. It’s a great unit and great team whom I trust implicitly.
However it gets ridiculously busy.

Mike

[MikejanulewiczParticipant]

Hi Tom

The Daratumumab was all good yesterday.
You get intravenous Dex and intravenous antihistamine first then an hour later the Daratumumab at a slow rate to start then increasing every hour if bp etc is ok.
The antihistamine made me very sleepy for about 4 hours.
No other side effects, no nausea. Woke a few times last night cos of Dex but pretty uneventful really! Worst is how long it all took. From 8am to 7pm! The second one will also be slow but third onwards should be a little faster maybe 9 am to 4pm.

Today- a little tired but nothing else.

Good luck Tom.
Ive accepted you as a friend but I’ve no idea how this works so I apologise if I can’t work it out.

Take care.

Mike

[MikejanulewiczParticipant]

Hi Tom
I haven’t seen your picture/ posts for a very long time. I think it was maybe 5 years ago when I had a stem cell that I kept more up to date with the forum. Really glad that you responded to my post.

As a complete coincidence I’m typing this while having Daratumumab!!!
Intravenous Dex and antihistamines at 9am. Then slowly increasing infusion rate though the day if all good. My only side effect has been sleeping from antihistamine and abdominal pain for an hour probably from the Dex. All else is good so far. I hope that the drip will finish at about 6pm and then I can get home—- I couldn’t drive though as sleepy/groggy.
Good luck with everything Tom.
Regards
Mike

[MikejanulewiczParticipant]

Hi Sheena

It does sound positive. ive till got fingers crossed though.

Sorry not to have been in touch sooner

Let us all know how it goes.

Take care care

Mike

[MikejanulewiczParticipant]

Hi

Reply to Susie.

Re ct/mri. If your paraprotein levels are rising, then the team will likely start treatment based on this only, without the need for any imaging. Some people have a type of myeloma where the paraprotein level doesn’t rise in which case regular imaging can be helpful.

On a personal note though. I find it useful to know how bad my back is, so I’ve generally had an mri every 2 years. the Oma team have always been happy to arrange this. I have never felt that cost has come into it.

Good luck with everything.

Mike

[MikejanulewiczParticipant]

I love the idea of those badges 😀😀
Great idea.

Well done on 10 years Linda. A definate reason to celebrate and thanks for posting it. It helps to know of these celebrations.

Take care all

Mike

[MikejanulewiczParticipant]

Hi Jennifer

I’m just replying to question of how I was prior to sct. In short, I was pretty unwell, very painful to walk even short distances but I’d done well with the vcd treatment so the team wanted me to have an sct. The sct took a lot out of me and I lost a huge amount of weight, but the enforced rest in hospital really helped my back!! I attained complete remission but relapsed after 3 years. More chemo cycles and the team wanted me to have another sct. However I decided not to have sct.
My only advice is to go along with your dad and have a discussion of your concerns and come up with a plan. Having an sct isn’t urgent and can wait a little while so the team may wait a couple of months for your dad to get back some fitness.

No decision is easy but if it’s thought through and discussed then it does help.

Good luck with everything.

Mike

[MikejanulewiczParticipant]

Hi Glynnis,
I really hope your husband will very soon get his pain controlled and be able to enjoy things again, even if it means a change to strenuous activities. You may have read above that I’ve had quite a few vertebrate fractures and collapses. I regard myself as very very lucky as my diagnosis and first fractures where 6 years ago. Yes I do still get back pain and I’m back on morphine, it’s not horrendous and I’ve no other side effects from my present chemo.

Now the most important bit!!——you.
It’s easy for us patients, it’s our spouses who suffer more as you watch us in pain and being unwell. I don’t know how best to suggest how to get through, family and friends are often very helpful, but I wonder if you yourself have spoken about support for you?? If your husband is still being seen by the hospice then this could be an avenue or alternatively, the specialist nurse from harmatology department. Or another suggestion, the nurse helpline from this myeloma uk site.

I’m sorry not to have been more help. Please let us know how things are going.

Take care.

Mike

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