This topic contains 14 replies, has 11 voices, and was last updated by 
jmsmyth 8 years, 6 months ago.
Well, this is a milestone day. My diagnosis and it’s attendant shock and horror was 5 years ago today, and I’m relieved to still be here and in relatively reasonable state of health, despite the nasty numb feet, disrupted gut and lost sense of taste and smell!
I’m going to take the opportunity to say thank you to all the nice people contributing to the site who have helped me get through some very dark days and nights over that time, it’s very comforting to know that there are people out there who understand and can offer just a little help.
Love Helen
Congrats to you! Keep on winning! xx
Helen, Glad you are still posting and more just carry on carrying on…I guess its a bitter sweet day – a reminder of “that” day but also a celebration that you are still in the race. Guess I’d be laughing and crying but more importantly celebrating my strength of body, mind and spirit. good luck x
Rebecca
Hi Helen
Good luck and well done on your fifth anniversary … I’ve read your posts over the years. Although I’ve never contributed to is forum I have read it regularly. I’m just coming up for my sixth anniversary. I wish you well for the future xx
morning. helen and denise. it is heartwarming to hear five years and six years mentioned in your post it gives us hope !!!so thank yoh ladies i follow helens posts and a m inspired by her continued strengh. good luck with the ne t five years lets all keep positve. xxannlynne
Hi Helen,
Reading your title of five years suddenly made me think that it was six years ago this month when my three vertebrae collapsed which certainly speeded up my diagnosis of myeloma. I still remember going through my sct in Sept 2010 and being told at the 100 day consultation meeting afterwards that I would be lucky to achieve two years remission. It’s good news that the newer drugs are managing to extend the lives of myeloma patients with many more of us achieving five years or longer living with myeloma. As you say, we learn to put up with the various side effects of fatigue, bone pain, numbness in feet, rounded shoulders, loss of taste and smell, together with the good and bad days.
Keep positive and look forward to many more years ahead of you.
Jan x
Hi Helen
I haven’t posted in a while, but just wanted to say hello. It’s really good to hear you are doing well. I’m sure that you are just like me mum, uncomplaining to family. They too will think of diagnosis day and look how far you have all come and grown closer. Here’s to the next 5 years and beyond….I expect nothing less 🙂 xx
Love Ali xx
Hi there Ali, Jan, Ann, Denise, Rebecca and Melanie and many thanks to you all for your kind replies. It’s nice to know you are out there.
I’ve found this milestone a funny one as it suddenly seems quite a long time now since this journey began and I feel relatively good. I’m not as angry about the situation at last… That’s something that has taken a very long time to get to grips with!!
Ali, I try every day to be uncomplaining and usually lose the plot by lunchtime, then start yelling about all the things I can’t do anymore like opening jars and lifting heavy pans- I find you can’t get the staff!! I bought a gadget to take tops off now!
Today is a Dex day ..hence the rambling!
An update on the rising light chains in October/November when they crept up to 271, today they are 209
So hopefully another slightly higher plateau.. Needless to say I’m very relieved. Time to book another holiday I think, while I have another month respite.
Take good care of yourselves girls
Love Helen
PS has anyone heard from Andy?
hy helen. dont think andy posts on here much now. i think hes on facebook . but im not !! this forum is about all i manage haha. just wondered from your last post do you think mm patients make up most of the holiday bookings in the country because most people who post book a holiday when they get breaks in treatment or a bit good news or. any excuse. maybe lol.ive got appointment with consultant end. of feb. but booked lanzarote for early march regardles. take.care. xx. annlynne
Hi All,
Good to hear from some of the regulars again. My Mum is currently 9 years on from original diagnosis and starting treatment. She is nearly 87 but still in reasonable health. She has had the full arsenal of treatment and is now just on a low dose of dex and cyclophosphamide. She has always had a high light chain reading – Light Chains currently 21,700 (but no kidney problems amazingly) and PP 52. Other bloods are all OK apart from some anaemia so she had a blood transfusion every now and again. She continues to surprise us all with no bone problems either!
Take care all of you,
Jill
Hi Helen
Hope you are still doing well. Ian is 3 years past from diagnosis and I never thought he would make it but here we are 9 months post SCT and still doing well. I have arranged a birthday lunch for his 60th birthday and have requested donations to Myeloma.uk. We couldn’t get direct flights to Vienna so we are off to Copenhagen on 29 March.
It’s so nice to keep in touch with people who helped us through the tough times. Keep positive and hopefully you will get many more years.
Love Maureen x
Hi Jan
Good to hear your FLC were decreasing, last time we wrote. Have you got a date for a SCT?
We have both got bad coughs again. I went to London last weekend to meet up with my daughter, went to see the musical Beautiful about the life of Carol King. I loved it and knew all the words, that was my era. I also climbed 376 stairs of St Paul’s cathedral, my poor legs. Wakened on Sunday with a wheeze and a cough and I have been in bed most of the week and passed it on to Ian. He isn’t on chemo but we are keeping an eye on it. I think we need some sunshine.
How is you hubby’s arm and has your son got a date for his operation?
Love Maureen x
Hi Maureen
So sorry to hear you have both suffered with trying to shake off a cold virus, which unfortunately is so common at this time of year. At least Ian has over a month to fully recover before your next trip abroad.
I completed four, three week cycles of Velcade, Dex and cyclophospamide before Christmas, which reduced my light chains down from 1900 to 150, but because my bloods were so low I had two weeks off treatment which saw my levels rise again to just over 300. However, after a fifth cycle without the cyclophosamide, the light chains have slowly reduced to 243. Now I wait to see whether there is any further reduction after a sixth cycle before I know whether the sct will be a possibility. I might still have to complete eight cycles to reduce the myeloma levels as much as possible. The good news is that the treatment after Christmas has been easier to handle due to once weekly Velcade injections with less steroids per week so the side effects are more manageable. The peripheral neuropathy is spreading into both legs, but is controlled with some extra pain killers. I ended up being monitored on an ecg machine this week before my Velcade injection due to a heart flutter being identified with a high heart rate, probably as a result of the ongoing velcade drugs.
Hubby is going to weekly physiotherapy for his sore shoulder/upper arm, which the physio thinks is due to his poor posture whilst driving or whilst working on the computer. He is also due to see a heart consultant next week, because he has been experiencing irregular heart rhythms over the past few months and tests are required to see whether they can identify any cause. Personally, I think it’s possibly due to the stress of coping with the ups and downs of my treatment and all of the associated extra work which the carer undertakes as well dealing with his own job. The youngest son has his tonsillitis operation Easter Friday, so he will be living at home with us for a short time whilst he recovers. My elderly 96 year old father is now borderline type 2 diabetes due to the extra weight from the wonderful three course meals at his care home. Trying to encourage him to reduce his food intake is falling on deaf ears.
I hope Ian feels better soon. I’m glad you enjoyed the Carole King concert. I don’t know how you managed all of those steps. At present, I struggle with going up the stairs in our house unless I’m on steroids.
Love Jan X
Hi Helen
I am hardly on Site now as apart from you and Andy there don’t seem to be many names I recognise.
Congratulations on your fifth anniversary. It’s strange isn’t it to arrive at a point you didn’t think you would arrive at. I am now well into my sixth year post diagnosis so feel grateful I have survived so lon. Didn’t think I would when I read early Info Sheets.
I feel very grateful to still be here and still in remission, but I am really suffering with bone pain and with internal soreness which I think is caused by the Gabapentin I take for the pain.
We still can’t think of going away, but we are both going to work at getting as fit as we can now the nicer weather has come.
Let’s aim for ten year hurdle and prove the gloomy pundits wrong.
Lots of love.
Mavis xxxx
Hi Helen
I’m very rarely on the forum these days. Just popped in and saw your post. So glad to read that you are doing well. Have you been able to get away anywhere. Hope you go from strength to strength
Mavis glad to read your remission is still strong. Frank is on pregablin for the aftermath pain of shingles. He’s been on them over 2 years but he asked doctor to wean him Off them as he cant take the side effects any more. He’s right down to 25mg. Will have to wait and see if the pain will be as bad.
Keep well
Jean x
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