[chris55leesParticipant]

Sorry I pressed send too early .

Also I have contacted Myeloma UK and they are always very helpful as are my consultants.

Best of luck

Chris xx

[chris55leesParticipant]

Hi Sue ,

When I first started treatment my paraprotein was about 38 and my bone marrow showed 10% plasma cells .

I have been interested in the treatments and what will be come available .I have found this site and also an American site
Health tree foundation for Myeloma (Myeloma Crowd News – I type in

[chris55leesParticipant]

Dear Sue ,

I was diagnosed when I was 56 in 2012 with Myeloma .I had a bad cough which resulted in a lower vertebrae being shattered close by their was a tiny plasmacytoma.The GP did a blood test that indicated Myeloma .I choose to be referred to the teaching hospital rather than the nearer district general hospital .
I had operation on my back ,recovered quickly ,and 1 treatment of radiotherapy .Then went on a clinical trial and was so fortunate to receive Lenalidomide treatment and maintenance after my stem cell transplant.Lenalidomide is one of a number of drugs that are used now together at first line for a lot of patients leading to very good outcome and long periods of remission.
When I was diagnosed the youngest of our 4 children was 17 I was so worried about her and my husband worked abroad .The time during full treatment can be difficult and recovering from stem cell transplant takes time and I needed support .For me the it took 12months.
My youngest child is now 30 ,got married this year and has moved to Australia to work as a doctor for a year .Later this week we are going to Australia even though I am on treatment .
I think even young children need to be told in way that’s age appropriate .This medicine will make me better it will take awhile and during that time we will help each other .I took my youngest child for a treat the day after I was told and that weekend when everyone came home we went out for a family meal .When I was completely well the whole family went on a special holiday.

The one thing I really didn’t like was loosing my hair so I understand what you are saying .It does grow back .
Rebecca, our youngest daughter daughter did say this year if only I would have known at 17 how good this all turned out .

The treatments have so improved in the last 12years.

Best wishes Sue

Chris x

[chris55leesParticipant]

Hi Emmasue123

I was diagnosed with Myeloma in 2012 and on maintenance have had insurance for holidays in America ,Europe ,New Zeland during the first remission .

In June 23 I stopped having Daratumumab as I had relapsed on my 2nd line treatment .I really wanted to visit my daughter in Australia.My consultant agreed that I was fit to go holiday for 2 weeks in September and as soon as I returned I would start my 3rd line treatment . It was a little more difficult even with the more specialist companies to find one that would give me insurance and it did cost £450 .I was so happy and had a great visit .

Also from my experience it’s important that your consultant does write in your notes you are fit to travel and this should be written so close to the start of the holiday – obviously check with insurance company ,keep records of any visits to GP hospital etc for any medical complaint as well as myeloma as the insurance companies do ask lots of questions and be completely honest .

Best of luck and hope you some lovely holidays.

Chris x

PS I have never had to make a claim

[chris55leesParticipant]

Hi Joverson

A few texting mistakes in the above

Dbd should be DVD

Line- I realize no every Myeloma patient is different should read

I realise every Myeloma patient is different

Good luck

Chris

[chris55leesParticipant]

Hello joverson,

I was diagnosed in June 2012 and had my SCT May 2013 .I was on the Myeloma X1 clinical trial and received Lenalidomide maintenance
Until March 21.
September 21 I began DVD treatment .The results showed it was working however I was feeling bad .In December 21 my consultant recommended I have a break from treatment for heart and lung tests .I was off treatment for 5 weeks and tests showed my heart and lungs had not been damaged and I felt back to normal .When I resumed treatment there was none of the previous breathing problems.
In June this year I stopped Daratumumab treatment because I had relapsed.

I have now started a new treatment .

I did have bad experience Dbd but stopping a few weeks resolved it .

Obviously the DVd treatment didn’t work as long for me as others .I thought it would because my treatment had worked so well first time and given me a long remission.

I realize no every Myeloma patient is different .

I go to St James in Leeds and am so pleased with the treatment advice I have received since 2012 from the many Myeloma consultants there . My advice would be to listen to the consultants if you are at a centre like me if you are at a smaller hospital and maybe there is only 1 specialist ask for a 2nd opinion to help you make your decision.

Hope this is of some help .

Best of luck

Chris .

[chris55leesParticipant]

Hi Tom

I was fortunate I was on the Myeloma X1 clinical trial and I had Lenalidomide maintenance from May 2013 to March 2020. Then 2nd line treatment and I am soon about to start 3rd line .Even though I am relapsing I feel well .

Onwards and upwards for us and I thankyou Tom for the support you have given through your posts.

Chris x

[chris55leesParticipant]

Tom thankyou for letting us know what is happening .
I was diagnosed in 2012 and as a new patient new very little about myeloma .
I found reading your posts and the other regular posts so very helpful in understanding this whole Myeloma business and seeing there is hope . Then when new treatments began on the journey reading about the experiences of others made it for me less daunting .

You always finish with onwards and upwards and that positivity becomes infectious.Thankyou Tom for making my journey with myeloma easier ,I so appreciate your posts.
Thinking of you , best wishes and onwards upwards for us all .

Chris x

[chris55leesParticipant]

I was diagnosed in June 2012 and especially the way the forum use to be , it was so useful and supportive . Why was the forum changed a few years ago? Who decides when it is changed ? Do the users have any say in it? . The changes made last time resulted in a number of regular users who were a great help and support to many of us beginning the myeloma journey leaving the forum and moving to face book . It will be such a shame if this site deteriorates as such a forum can provide so much support to patients and their families .

[chris55leesParticipant]

Hi Graham presumably your count started to drop again . I was disappointed when the dosage was reduced . Chris

[chris55leesParticipant]

I am on Revlimid maintenance as part of Myeloma XI trial .In March of this year (three years after SCT) I had to reduce my dose to 5mg due to neutropeania. Hope this is of some help

[chris55leesParticipant]

Hi Avril

I have just got travel insurance for a two week holiday in America with Avanti for £231 . I was diagnosed in June 2012 , and had my bone marrow transplant in February 2013 . I am in remission and not on any painkillers .Hope this is of help  Chris

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