Hi Victoria
Yep, might be nothing but needs a doc to check it out.
Helen
Hi Graeme
Back to the hospital methinks, first thing speak to nurse specialist. Might be nothing but up our way they like to know about things like this.
Helen
Hi Maureen
Thanks ..it was a lovely birthday, spoiled by steroids a bit but overall great fun and lots of treats.
Hope Ian is well?
Love Helen
Dear Dusk
I’ve not had any dental work so I can’t say what is best from personal experience but I do know that if you are on a bisphosphonate, especially Zometa, invasive dentistry is to be avoided at all costs if possible, to prevent osteonecrosis of the jaw. Any extractions should be particularly avoided for a few months after zometa. I was advised to have my teeth checked before starting treatment, to regularly have my teeth checked and to use a mouthwash as well as all other teeth cleaning appurtenances to prevent any infection arising while on chemo.
Dear Andy
Good to know you’ve had a good holiday and are planning the next, I fancy Italy later in the year…. Must put more effort into that….
What are they planning to do to your back next? Was the kyphoplasty not enough?
…….as for being 60.. Well I’ve decided to stick at 48 !! and as long as my children start to lie too I’ll be fine!
Have a good time at the info day next Saturday – I’m really sorry to miss it.
Love Helen
Dear Eve and Slim
I think you are quite right to push for what Slim has chosen. Each one of us needs an advocate and he has a champion in you. It is very easy, given the incurable nature of myeloma and the complicated path it takes, for us to almost be written off when things become grim. The closer I get to the scarey decision making about the next step, the more I appreciate every second of every day. I know I too will squeeze every last minute out of my life. I have to take my hat off to you Eve and hope you have some happy and peaceful time ahead, with treatment locally too!
Love Helen
Dear Ali
A 5 pack of pants- now that’s extravagant! Seriously, I’d drop some pretty big hints, the sooner the better- more chance to get it right!
What can I say, relapse takes a while to get your head round and Velcade was a difficult one to endure. I had 2 Velcade injections per week for 2 weeks then a week off, I also had cyclophosphamide and steroids.
I managed to work and do normal stuff for 4 cycles before the pain and peripheral neuropathy became too unbearable, then I was reduced to 1 injection per week.
The Velcade day was ok until 5 hours after I had it then I ached and needed to sleep for about 12 hours.. The next day I was tired and gradually improved, ok next day then started over again. It seemed very cumulative. I also had the usual steroid fatigue and cyclophos nausea and hair loss sadly. I still have some residual neuropathy with 1 really tired day in 4, the rest of the time I’m ok. The dental work has to be done ASAP and conserving teeth is definitely the best treatment in my opinion.
I do hope your mum gets a good result from the Velcade and can get second SCT out of the way soon. I’m still on watch and wait for a month.
Speak soon
Helen
Dear Ali
Thanks, I had a fabulous time, I’ve been treated like a proper princess! Tea at the Ritz and all manner of treats. Best of all, I feel well and have actually made it this far. And I’m still at work!
How’s your mum getting on?
Love Helen
Hi Rebecca
Ha ha ha ….well! I didn’t like being 60 I’ve opted to stay 48! Come to think of it I’ve never looked ill! In fact I’m apparently a picture of health ! I was told last week that I looked worse before my diagnosis than now, so who knows…. Steroids all round….
Love Helen
Hi Sara
Not everyone with light chain myeloma has kidney problems. I have it and have no bone or kidney damage and have had more problems with the drug effects than the disease so far.
Helen
Dear Mavis
Thank you, it’s all very difficult isn’t it. I think we are still a long way off individual tailoring of treatment, due to the erratic differences between us all, but we must live in hope.
Hi Andy, you must be back now? Hope you managed to soak up a lot of that lovely Greek sunshine, I think I might have to book another holiday as soon as possible!
I had a fantastic birthday! Treated to all sorts, opera, diamonds and meals out and a family bash. I have been ‘spoilt rotten’ as they say and it continues as the husband also clocks up the big 60 next week…. So party party party!
My last bloods were a bit mediocre, but I’m not back to clinic until mid June so I’m making the most of our birthday season and trying to put it all to the back of my mind!
Hello Wendy I’ve been wondering how you were getting on on the Velcade, it’s very much a case of getting on with as much as possible I think, I will keep you posted, my sisters have their blood packs now, no allo for me unless I have a really good sibling match, and I can’t decide what to do even if one of them does match…. It all sounds so daunting. So good luck to you too.
Love Helen
Hi Andy and Vicki
Thanks, sorry I’ve taken so long to reply, I was waiting to see what happened after the dex…..and today’s appointment.
WELL,!!
I had another blood test the day before the dex started… These results were a bit better than the previous set! So may be a blip! Anyway I’ve had the 4 days dex.
So more bloods today,
NO more treatment for the next 4 weeks and then just dex again and we will wait and see what happens. All sisters have been asked for their blood to tissue type. I will think about that one if there is a good match but not until then. I’m with you I think Andy, I’d like to try the drugs first. But I’m fit now and maybe if I had an allo when fit I would be better overall…oh I don’t know what to think!
I feel as though I’ve been put in a state of suspension, as soon as the bloods slip again, then it’s the full BMB, X-rays, genetics etc, but for the minute…… Nothing, so I’m off to London tomorrow for a birthday treat, party on Saturday and I still feel well, an unexpected reprieve!
I’m just keeping my fingers crossed
Love Helen
Hi Ali
It is just a year since I started Velcade, similar to your mum. I was ok, and fit, so they hit it hard. However, it is tough and I found it very painful for about half of each cycle, as the treatment went on the pain in my feet worsened so they halved the dose. I now have some residual ache in my feet but have had several painkiller free days recently, so it is improving.
Hair, well, you know me! I’ve had it coloured all the way through this time, even on the cyclophosphamide! It did get very thin though. I have that ‘dip dyed ‘ look where only the ends are really coloured and apparently it looks fine. I think ammonia free products are used. My hairdresser sprays hairspray to make my hair stand on end then paints it with a brush. I sit under plastic for an hour then they tone it, I blow dry it upside down and leave it shaggy looking, I don’t wash it as often as I used to as it is much harsher and drier hair than I had before, but I use lots of hair wax.
I’ve updated my treatment situation in my post.
Love Helen
Hi Rebecca
I think it is the right thing to distance yourself at times from all to do with myeloma, there is a danger that it becomes all consuming, but we do like to keep tabs on people on here and see how they are doing! So you have to keep popping in now and again. I’m afraid I’m just getting angrier and grumpier about the whole injustice of it and the treatment not lasting for very long, as soon as I get back to fitness I drop downhill again!
I will be phoning for results on Monday and hopefully get some idea of which drug when! I feel as high as a kite on the dex so will probably be up all night now. At least all my sisters volunteered to be tested if it comes to that… If it is considered to bethebest option and one of them is a good match I think I have to seriously contemplate it, I just want to be here.
Izzie
I’ve popped a note on your other post, but I’ve just had pain killers recently for neuropathy and back pain so it’s horrid being back on steroids!
Hello Mavis
Good to hear from you, I hope you are doing well.
I think the rush to bring my numbers down is because the light chains rose very quickly and my neutrophils lymphocytes and WBC have dropped, though I’m not anaemic, he is suggesting that the bone marrow is under pressure and could worsen very quickly. When I was first diagnosed these were the worrying numbers and I was told that in my case this was the best indicator as I’m a low secretor of light chains with no pps. I have no bone or kidney signs either. They aren’t really considering CDT as I had Revlimid and relapsed while on it as maintenance and it is similar but stronger than thalidomide. I will of course give it a go if I’m not allowed Pomalidomide. We just have to try them all. I do see why holding off treatment is so vital if you go through them as quickly as some of us seem to!
Love Helen
Hi Ali
If all bloods are all ok this is a good thing, means the bone marrow is functioning properly and saves starting on the treatment route just yet. The treatments have to be kept in reserve for as long as possible as individually we don’t know how quickly we will work our way through them all, but the plasmacytoma needs fixing so close review is the order of the day. It might settle down again… I have a friend with mm who developed a new lesion about a year ago, had the radiotherapy and is still progression free, so she is doing well and has had 21/2 years from her transplant so far. When is the first session?
Love Helen
Hi Izzie
Good luck with the transplant, hope you have an easy ride. Keep drinking as much as possible!
The zometa is usually stopped for a few months over the transplant time, I restarted mine at the 3 month mark on the myeloma xi trial.
Love Helen
