This topic contains 17 replies, has 6 voices, and was last updated by 
andyg 10 years ago.
Ok folks, sorry to have been incommunicado for the Last few weeks, it’s been busy here recently, I apologise to those I should have replied to (Andy,Eve )
So, my dad fell over, broke his arm, got pneumonia, died.
We had a lovely funeral.
Then, went to the film festival, came second in category (hurrah)
Bought a new house
I HAVE RETIRED TODAY.
.and got my latest bloods back… All going off the scale now, so start treatment again next week.
My question is ‘ does anyone have any experience of Interferon?’it’s that or Pomalidomide then I run out of palatable options.
Hope everyone is well
Love Helen
Hi Helen
Your life has certainly been quite eventful over the past few months. I should think you are exhausted after moving house and need the spare time which your retirement offers to recover, relax and spend some more time with your family. Did you enjoy your time at the film festival – it must have been a memorable and completely different experience. I’m sorry to hear about your father. It’s such a shock and so emotional when your parents unexpectedly die without much warning, which is what happened to my mom a few years ago when she was diagnosed with leukaemia following a blood test, admitted on the same day to hospital for treatment, but contracted pneumonia and died a few days later. My father could not understand just how quickly she deteriorated in hospital and was still in shock for months afterwards.
You must be very concerned about your blood results and worried about the next stage in your treatment. Do you currently experience any side effects or generally feel well at present? Unfortunately, I haven’t heard or read much about interferon apart from some brief details on the Myeloma Beacon site about the drug being used for maintenance therapy and can be combined with Thalidomide. Perhaps you might be able to discuss the options with the nurses at Myeloma UK or seek a second opinion about your next options.
Regards Jan x
Hi Jan
Thank you, it’s been a bit tough the last few weeks indeed. We haven’t moved yet, just got survey booked.
How are you doing? Are your light chains stabilised? I had BMB today,(very painful :-() as mine have jumped suddenly to the same level I was at at diagnosis. I’m starting on Pomalidomide next week.
Love Helen
Hi Helen
A painful BMB is not pleasant, even the bruise afterwards can make you wince with pain when you turn in bed or sit back on a cushion. I hope your house survey goes well. I don’t think I could face the effort and energy required to move house again, especially with the large quantity of junk we have managed to accumulate over the years.
My light chains have been see-sawing for the last couple of years, with an overall upwards trend. I reached the review point for further treatment when my results were 1,o00 about a year ago, but unexpectedly the next two tests showed a decrease to around 700 which gave me some more time and my skeletal x rays showed no further damage since my diagnosis in 2010. I’d love to know what causes the light chains to reduce so significantly for no apparent reason. However, my results last month showed by light chains at 1,140, with some reduction in iron levels and neuts to 1.1. I’ve never had high levels of neuts, but have managed to stay within a range of 1.2 to 1.8. I’m hoping my neuts will keep above 1.00, otherwise I would be excluded from some clinical trials. My consultant is happy to let my light chains reach 1,500 so long as my blood results are OK and no other bone symptoms are evident.
Every couple of months, I’m on tender hooks to know what the next set of results is going to reveal.
I hope you cope well with Pomalidomide, which appears to be a promising drug for myeloma.
Love Jan x
Hiive Helen.
No need to apologise life does continue outside the myeloma bubble sometimes it’s good other times it’s not so good and the forum takes a backseat for a time. I’m sorry to hear about your dad. Never an easy time. Steph’s dad died last month so we have some idea of what you’ve been through. I got officially finished from work in June so I’m retired too.
We just got back from our latest trip away a week ago. Had a weekend in Athens after we were invited there by the family whose hotel we stay at in Kefalonia. It was a great weekend we really enjoyed it.
I’ve never come across anyone being treated with interferon for myeloma. Isn’t it an older drug that was a general cancer treatment in the past? As you know I’m on Pomalidomide now, just finishing my eleventh cycle, and it has crossed my mind a few times as to where I go when it fails. Bendomustine has been mentioned as a possibility but I will cross that bridge when I get to it as for now I’m doing ok. I’ve found Pomalidomide easier to tolerate than Revilimid but I’m not taking Cyclophosomide with it which is a big plus.
Hope your move goes smoothly and remember not to over do it! Let the strong ones do the work and you supervise.
Fingers crossed you get a great response from Pomalidomide. I’m sure the Prof. will take good care of you.
Every day is a gift.
Love Andy xx
Hi Jan and Andy
Well the bruises are reducing a bit and the aching leg is subsiding now!
Jan, I was hoping to have followed your lead here and sort of dropped back to ‘smouldering’ for a while, you have been quite lucky I think to have been so stable for such a while.
My neuts have been around 1.1 for the last few months but dropped to 0.6 last week…hence the urgency to treat:-(
Andy, more holidays booked yet? I’m off to Amsterdam in December,all being well…pre daughters wedding, I hope she got it all sorted by then! Moving will be done slowly too as I can’t be doing with it really!
I think the interferon plan was a glimpse of the future.. We had a chat about what happens after Pomalidomide…it was both interesting and scary ..as for those of us who progress rapidly through the available options are discovering! Anyway, if I get a good response and remission with it, he will contemplate Allo graft or repeat auto. If this doesn’t work we will try some of the older treatments including interferon and continuous steroids. It is ironic when I feel fine and look as fit as a lop! Hope you are off the Dex by now, I’m not looking forward to that next week!
Love Helen
Hello Helen
I rarely visit the site now, but a mix up with the alarm leads me to the time to pop in.
I’m very sorry to hear about your Dad, must have been a huge shock.
Film festival? I have definitely missed something there!
My parents are selling up…they have already moved into new house with my Nana, proving to be quite stressful I’m afraid! Good luck with your move, all hands on deck required!
Congratulations on your retirement 🙂
May the new treatments prove very successful
Mums story so far,
Relapse due to chance finding of plasmacytoma
5 cycles of velcade/Dex
High dosage of radio therapy to rib with plasmacytoma
Talk of 2nd sct – decided to save that til later
Next appt Jan 2015
Takes forever to type on my phone!
Kids are up now so its action station s!
Love Ali xx
Hi Helen.
It’s my steroid night as you may of found it’s taken weekly every week with Pomalidomide or at least I am. Pomalidomide seems to have a good response track record so hopefully it’ll get you to SCT. You didn’t have a great time after your last SCT but I guess time is what we want. It was two years ago the Prof. was looking at an Allo for me but as usual my blood didn’t play ball and a suitable match couldn’t be found. There’s no end to my luck lol.
We’ve not had a serious talk about what happens after Pomalidomide gives up but both Bendomustine and Melphalan have been mentioned when Revilimid was on it’s last legs  but we’ll worry about that when the time comes. I too look, as well as I can
Hi Helen
I’m glad you have popped in again, but so sorry to hear about your Dad. However it is great news that you have actually retired! I do hope and pray it is a long retirement in spite of MM. So glad you have your daughter’s wedding to look forward to.
Go well with the treatment.
Lot of love.
Mavis xxxx
hi Ali
Good to see you again and glad your mum is doing ok again, 2 months between appointments ..that would be nice!
I’m at the end of week 1 on Pomalidomide, so far so good! Dex is terrible but otherwise I’m feeling pretty normal, whatever that is!
The move won’t be until next year, got to get the wedding out of the way first.. Nearly all organised though.
The film was the daughter’s first foray into production, they came second in their category, so all very exciting though no calls from Hollywood yet, hey ho, we live in hope (or maybe in cloud cuckoo land!!)
Hi Mavis
Thanks, it was sudden for dad at the end, he had been very frail for a long time, but we were so used to him being there, doing the crossword and watching the cricket. It’s so nice to hear from you again too, how are you doing? Still in remission I hope.
I’ve just been away again, visiting friends, this retirement lark is weird as husband retired too, so every day is a Saturday now! We don’t have to go to bed early or get up early, it’s very strange!
Dear Andy
Yes I’m on dex again, awful stuff but it’s part of the price, if I get a good remission there might be another SCT .. But I don’t know how I feel about that yet, the last one was so awful. Somehow I never expected to be at this stage, I’m feeling tired but well and with failing bone marrow, I can’t quite believe it’s really at such a serious stage.. every time I have a blood test I go in thinking it will be ok and every time it’s worse. Anyway I’m back on Tuesday and hopeful that the Pomalidomide is begining to work.
Any more Greek trips planned?
Love Helen
Hi Helen.
I just reread my last post and it seems to of been cut short.
I’m tired a lot of the time but I put that down to my sleepless nights due to the Dex effects. It’s a worry I have wondering how long my bone marrow can last with all the battering it’s taken with over three years of drugs. Though Pomalidomide seems to be a bit more gentle on my system as all my blood tests have come back ok or I should say bloody brilliantly for me
It’s happened again my posts been cut of in it’s prime!
Now then how did it go.
Do you have stem cells stored for a second SCT? I think if it was me I’d delay the SCT whilst I was doing and feeling ok especially in light of the experience you had with the first SCT though I guess no two SCTs are the same. Quality of life for me is the most important aspect of treatment and if you’re feeling well why risk it. That’s my thought anyway.
Hopefully Pomalidomide will get you to remission quickly and then you will be better placed to make a decision on the second SCT. I’m on my twelfth cycle and my PPs are holding at the mid sevens.
You’ve got a busy few months coming up Christmas, wedding, moving and not forgetting Amsterdam! Time will fly by. We’ve not got anything  in our holiday diary. We did have a trip to the lakes booked but that’s been cancelled so will need to be rearranged and we’ll probably be going to Greece again in May so that needs to be booked. Hopefully we’ll fit in a few days away here and there before then.
Hope every thing goes brilliantly at your next blood tests.
Every day is a gift.
Love Andy xx
ps. This better not get cut short because I’m sleepy now lol.
Hi Andy
Thanks, I have cells saved for second sct but it’s not going to be an easy decision. I’m on the 2nd Dex night! No sign of sleep for me! Tomorrow will be exhausting. Finished the first week ok and feel well.. Bloods still iffy, risen neuts but dropped hb and platelets! Anyway not back for 3 weeks now.
I’ve spent the day making table decorations, then it’s mince pies for the Narnia/ frozen/ midwinters night dream wedding… I did tell you this was an entirely home made wedding didn’t I? We must be bonkers! But what can you do with these arty sorts who seem to think that all the rest of us technicians have to do is put their ideas into reality! Then they claim all the credit! I keep telling myself it will be lovely, if we can get past all the agro of who we’ve offended by not inviting the children we’ve never met, I ask you is a wedding really the occasion for reestablishing a family link after a 15 year gap?
No doubt this thorny issue will run for the next few weeks.
Speak soon
Love Helen
Hi Helen
Apart from serious mobility problems I am doing well. Still in remission though keeping my fingers crossed for my Consultant appointment in December when PP results will be available.
I’m with Andy about “quality of life” issues. I remember dear Dia saying once, that he regretted his SCT as it had only bought him ten months remission yet involved all the very distressing side effects. (Ido hope I’m not misrepresenting him. God rest him. Still greatly missed.)
Do hope you find the resources to cope with all the inter family issues that the wedding is bringing up. It is not supposed to be like this, is it. I do hope the wedding is a very happy day leaving lots of great memories.
I have really taken Andy’s slogan to heart “every day is a gift, use it well.” I have had it inscribed on my new iPad!
Andy, keep on enjoying life day by day.
Love to all.
Mavis x
Hi Helen
Sorry to hear you are no longer in remission but I do hope pomalidomide will get you back there. You have had a busy time, when do you move house, and will it be easier for you.
Exciting times for your daughter in submitting a film and coming second in her category. It might be the start of zometa8.ng big.
When is the wedding? It does bring out the worst in some people when deciding who gets an invite. My sister and I have not spoken for your10 years as she took offense that her son did not get invited with a partner. I had nothing to do with the invites and have tried to reconcile but I don’t bother now. Think it’s sad she can be so bloody minded.
Sorry to hear your dad passed away so quickly but he didn’t suffer.
We get Ian’s monthly results tomorrow. I am quite anxious and hope his FLC have either come down or are stable. All being well we would like to get a holiday in the sun either January or February. We had another short break at Rockliffe Hall in Hurworth recently. I love it, pure luxury. We all saw Kylie in Glasgow
Look after yourself.
Maureen x
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