Hi Jean,
Good luck! I had my harvest in October, and unlike Megan and Phil I had the opposite problem of too much info… The transplant coordinator nurse sat me down and told me everything very clearly and then the consultant came in and told me the same things all over again 🙂 He is German and very meticulous! They also gave me a DVD called 'At Home with Granocyte' all about the injections, not exactly blockbuster material and I have to confess that I never watched it. Anyway, I just wanted to pass on that he said if you get an infection during the ten days you might not achieve the right level of stem cells to do the harvest. He drew a little graph that showed how the level goes down over the first couple of days due to the hit from the chemo, and then your system goes into overdrive to recover so it goes up and up, helped by the GCSF injections. They are aiming to catch a nice high peak on day 10 or 11 or whenever they do the harvest. It would be pretty annoying to do the same thing all over again, it felt like groundhog day to me anyway to have the same injection at the same time every day for 10 days. So I didn't really go anywhere during those days apart from to hospital in the car. To be honest I wouldn't have felt like massive socialising since I also was hit pretty hard by the cyclophosphamide, vomiting etc once the antisickness wore off after 8 hours – it did pass, but I wasn't expecting it, so just wanted to let you know in case it happens. I'd been sick also during my last cycle of induction chemo so I think my body had just had enough of all the drugs and was starting to protest…
Hope it all goes well,
Helen
Hi Tom,
I'm a fellow Londoner and also had PAD treatment, 4 cycles from June to September, and then a stem cell harvest in October. i'm not doing an SCT, due to the study I'm on and the fact I've had a Complete Remission.
You must be gutted to be having to go through it, but PAD seems to be a very effective sledgehammer, and it's definitely a good idea to whack the MM on the head before letting it make any more holes in your bones, because you can't really do much about those once you have them. But the treatment can get rid of the active disease and put you into total remission, so hopefully that's some comfort!
I'm trying to remember what the first two cycles were like. To be honest you may notice the side effects more if you're feeling quite healthy to start with. I was feeling pretty rough and didn't notice much! I've been off work the whole time. As Megan says, the whole regimen does really make you tired and the Dex gives you insomnia (so do take sleeping pills if you need a night's sleep, I'd take zopliclone a couple of nights normally). Then again, it does make you feel quite happy and energetic (one of my consultants said it's like cocaine…) and I remember more than one person I spoke to on those days saying I sounded 'perky'… Sometimes you can just use the Dex time to read things or do stuff… I think those were the times I really looked at the Myeloma UK website etc to undersrand what MM is. But you've had time to do that already… Then the days after the dex (which are also after the dox) you feel crap so don't plan to do anything except laze around. I didn't have any major stomach type stuff, think slight runs after velcade but nothing dramatic. I found the antisickness pills worked fine unti some sickness in the 4th cycle. My hair fell out towards the last week of the first cycle. But it's come back now! I remember having swollen ankles sometimes.
Anyway, some advice I was given was not to get depressed by all the side effects etc but just to see it as a good sign that the powerful medicine is working…
Do get in touch if you have any questions as you go through it – weirdly I seem to have forgotten all the detail already… Hopefully that in itself is also encouraging! Bad at the time but soon forgotten.
Getting to grips with the diagnosis and worries etc is obviously a whole other kettle of fish, tons of advice about that on here. Good to talk to a counsellor, accept that it's all a bit of a rollercoaster etc as it's a very extreme and unwanted situation to find yourself in. But it's ok.
Helen
Hello,
This is second hand but I wanted to pass on the positive experience of a nice guy who I've met many times in clinic. He was initially diagnosed aged 34, which is now 17 years ago. He had a first remission of 7 years, and then a second remission of 10 years! The doctors told him it would be shorter the second time (which, as people have said, is the norm). But in his case it was longer. I don't know all the details of his treatment – he had auto SCTs both times, I think he said he had interferon maintenance treatment for 5 years. And this time around he's having PAD (velcade, dex, doxyrubicin) and then planning an allo over Xmas apparently.
On the question of whether SCT or not – my understanding is that nowadays with the novel treatments e.g. velcade, they're no longer sure whether there is any additional value from SCT when you already have achieved a Complete Response. (If you've already whacked it as much as possible, what's the point in doing any more?) But then again this is a theory for which there is currently insufficient data. I'm on a study which is hoping to generate more data on this. I've had a CR from my induction chemo (also PAD) so I'm not doing an SCT, just 'watch and wait' – even though I'm only 33 so I'd be fit enough to do an SCT. Feels a bit odd in a way, as there aren't many people out there in a similar situation, but fingers crossed! But this is for people with myeloma the first time around, not sure whether doctors would say it's different after relapse. And actually, now I come to think about it they do phrase it more about 'deferring' the SCT: I've harvested stem cells so it would be an option later.
Anyway, I think it's fantastic (and very inspiring for the rest of us) that you had such a long remission! You defied the odds once, so SCT or no SCT I bet you've got a good chance of doing it again! Maybe you can do the chemo and make the SCT decision later?
Hope that's helpful. Good luck,
Helen
Very useful post although a bit depressing to see the answers… I've been really looking forward to being able to go swimming again when my Hickman line comes out 🙁
I don't think I'm going to be on any maintenance but I guess will need to be careful of infection risk after chemo for a fair while (or always?)
I wonder whether small pools in gyms are better or worse in terms of infection risk? I suppose in any case it's hard to find anywhere in London that's not busy…
Helen
Dear Dai,
I hope you're feeling better and just wanted to say thanks for all the great posts you put on here. I've read lots of them! You're really helping a lot of people. I'm currently doing my stem cell mobilisation, ready to try the harvest on Monday. No idea if the troops are lining up but I hope so… I guess I'll find out if I get the magic number '10'!
Good luck with the wedding – is that this weekend? That must mean so much to your daughter that you'll be supporting her.
It sounds like you're from Wales… I have Welsh roots and my great-something-grandfather was a poet, so one of the things I've done a bit recently with all this time on my hands is take a book of poems and try putting them into Google Translate. It's quite funny, because I type in what to me looks like a random bunch of consonants and vowels and then out comes something which half makes sense… Normally very religious subject matter as he was a preacher!
All the best,
Helen
Gosh Mika – aged under 20 and 26 years ago! That really is incredible. Thanks so much for sharing your story on here, it does really help to hear positive stories. And your English is excellent!!
Helen
Hi Emma,
Great blog – I just had a look! I recognise a lot of what you're saying. I'm 33, also on the PADIMAC trial (as is Alex who also just said hi), also a civil servant, even have a May birthday 🙂
Hope your treatment goes well. I started in June and have finished the chemo bit, having the stem cell harvest quite soon. Happy to answer any questions if useful. I'm not on the forum too frequently as I prefer to think about other things whenever possible, but I did spend hours trawling it at earlier stages – and like you say there's not enough for younger myeloma patients so I would have found your blog really useful!
Anyway, the main conclusion I came to pretty rapidly, which still holds true, is to think positive – nice to think that by next year we'lll all have put PADIMAC well and truly behind us. We'll probably bump into each other in some pub on Whitehall…
Helen
Thanks Eve. In fact I went in for my knee check-up on my 33rd birthday… But well, c'est la vie!
I'll stick a photo up soon, just doesn't work from my iPad and need to get laptop out … Maybe tomorrow!
Helen
Hi Keith,
My treatment includes Dex (on it now in fact!) I was told not to eat sugary stuff (easier said than done) as it can cause _temporary_ diabetes like effects. So hang on in there. Not permanent, I think.
No wonder you are feeling crap, but it will pass I'm sure. When I've been physically low (e.g. Last wek neutropenic) my positive outlook has also vanished… And then it all bounces back. Peaks and troughs. You'll get back out.
Sorry if that isn't helping, i haven't seen your previous post and other replies. Do ask your doctors if you are worried. And Myeloma Beacon forum perhaps? Has doctors.
Also don't underestimate Dex mood effects?
Really good luck, take it easy,
Helen
Hi Alex,
In brief (writing late again!) yes I'm happy, for the two reasons you mention: velcade is supposedly more active treatment and this was a way to get it as front-line not just after relapse, and you get more monitoring. After my first cycle, tests showed I had zero in both blood and urine (I have bence-jones version so just have light chains in urine, they came down from 1270 to zero, can't remember what bloods were before). So it's working very very well for me, so far.
After the 4 cycles of chemo I'll have to find out more about my options – as I read it, you can leave the trial at any time. Perhaps ask your doctor about what if you want SCT? As things stand, assuming my bone marrow biopsy confirms a complete response or very good partial,, it's looking like I wouldn't go on to SCT but save that for a later date. I _think_ I'd be happy with that, getting back to normal life sooner, avoiding side effects and long recovery and possible unpleasantness of SCt, but will want to find out a lot more at the time. One step at a time! Will happily update you with what I find out and choose to do.
For what it's worth, then miment of making the decision about the trial was my absolute low moment – straight out of general anaesthetic from leg op on a Monday night, little sleep as high on drugst, then was told all about myeloma and awful statistics and treatment Tuesday afternoon – and the straw that broke the xamel's back was being told i had to decide about PADIMAC by friday to start treatment on monday, spent all night googling not sleeping….. From finding some Good websites i realised I wanted velcade but after so little sleep and such bad news I was just a wreck physically and psychologically on the Wednesday. Had a massive cry for the first time, think till then I thought it was all a dream which would end … Cathartic actually. But I feel your pain and stress and confusion. Hang on in there!
So for me I felt the decison was a no-brainer but who knows for you? Don't take my word for it. Others on here may know more about CDT, I didn't research that at all. But I think 'novel' therapies like velcade v exciting. As a friend who works in Health said, it's not like getting a better bike, it's like a motorbike, works a whole different way. Also family member's friend is expert in myeloma (ex pharma industry) and my parents were in contact with her in those three days and she confirmed it was a good idea. I was unable to handle hearing the detail at the time but can ask my mum now if you like.
I found this clear description online: http://cancerhelp.cancerresearchuk.org/trials/a-trial-looking-at-bortezomib-adriamycin-dexamethasone-as-first-treatment-for-myeloma-padimac
Good luck, keep in touch! And why are all us young'uns getting this damn thing eh??
Helen
Hi Judy,
I'm in the same boat! I am also on the PADIMAC trial, and I start my 3rd cycle tomorrow. I learnt today from blood and urine tests that even after 1 cycle it had great results for me… I know it's an individual disease but I hope that gives you some encouragement. I haven't had too many side effects – the dexamethasone (steroids) have been worst, particularly having 4 weeks in a row of 4 days at the start…. But now it's only 4 days every 21 so at least it's not so frequent.
I'm being treated at St George's in Tooting which has been excellent. I had a fairly traumatic start with 4 weeks in hospital during which I had pneumonia including a night in intensive care, a leg operation (40cm pin down my thigh bone to prevent fracture), plus of course the total shock of the diagnosis and starting chemo. I thought i just had a bad knee… And I'm only 33 so it's very unusual to have this at my age. I was stage 3b or whatever the most advanced stage is and have a lot of bone lesuons. I've now been home for nearly 5 weeks and getting steadily better and better.
It's late so I won't write more but do let me know any questions and I'll help if I can! I may well also introduce myself more to the forum and come back with questions myself. I've found it very useful so far, hi everyone!
Helen
