Update on Mikes treatment

This topic contains 5 replies, has 4 voices, and was last updated by  avrilro55 9 years, 2 months ago.

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  • #123955

    jeapal23
    Participant

    I have not been on the site for a while just been busy starting a new job. However, we have been on holiday, an 18 day cruise, Mike took pomaladimide whilst he was away. He was okay with it but was getting very tired towards the end of the holiday. He also developed a small cough, he is still a smoker. We got back on the 298th August. I started another new job on Tuesday working for the NHS doing admin in critical care, (my job story is for another day). Mike took ill on Wednesday night, high temp and fevers, so off we went to the hospital at 10.30pm. They admitted him and I got home at 1.30am. back at work for 8am. Mike had a chest infection and they started treatment with antibiotic’s and fluids. Pleased to say they got the infection under control and he came home yesterday with two massive antibiotic’s to take.

    He is neutropenic, he has never been this before.
    He is back in clinic on Thursday to see if he starts cycle 11, I have a feeling they will not but we will wait and see.
    Jean

    #123961

    janw
    Participant

    Hi Jean,

    I hope you both enjoyed your cruise holiday. So sorry to hear Mike has ended up in hospital with a chest infection. Presumably he might have caught a virus from a fellow passenger on the cruise or the return airplane? But it’s good news that he is recovering well after his time in hospital. Perhaps with his immune system being low, the consultant might suggest a few weeks off from his cancer treatment whilst his immune system recovers. But if pomalidomide is working well, then I would presume there would be no reasons why his treatment couldn’t continue. All the best for his clinic appointment on Thursday.
    Regards
    Jan

    #123962

    bandityoga
    Participant

    Hi Jean

    Sorry to hear Mike has been in hospital but good to know they have got the infection under control. It would do him no harm to have a rest from treatment until his neutrophils are a bit better but ask his consultant. Encourage Mike to stop smoking, I did it 12 years ago and feel so much better.

    Hope you thoroughly enjoyed your cruise, we are off to Ibiza on Thursday for 10 days.

    Maureen x

    #124274

    avrilro55
    Participant

    Hi everybody

    I wonder if any of u have the answers to some questions. I have been off treatment since June 2014 -( my light chains plateaud at 47) initially had 5 weeks daily radiotherapy for a solitary plasmacytoma then a round of CDT for four months. It now appears after 15 months that my light chains are rising!  Think they going to do full scans and another bone marrow test and either monitor me again more closely or put me back on treatment. I under duscussion with the team at present! My question is when having Velcade, which has been suggested, is it given in combination with other drugs? Also as all other bloods stable and my light chains have only risen to 238 from 47 in 2014, is it better to delay treatment until they higher as have no symptoms at all, ie no pain etc and feel so well? Would be great to get some views on this. I wish you all well and thank you.  PS also have a 3 week holiday in the sun planned for January!!!

    #124275

    janw
    Participant

    Hi,

    It is a difficult decision of when to restart treatment, because you want to maintain your present quality of life, but equally you don’t want the myeloma to damage your bones or kidneys. Presumably your consultant wants to take a bone marrow test and scans to see what is the level of activity in your bone marrow and to detect any bone damage, especially as your light chains are gradually increasing. If all your tests are OK including your platelets, iron levels, kidney functions, etc, then your consultant will possibly decide to monitor you more often over the forthcoming months. Light chains can fluctuate up and down which makes it difficult to predict what your results will be in your next few tests. What were your light chains before your CDT treatment? Have there been any reasons for your light chains to increase such as an infection or virus?

    At present, the usual treatment at first relapse is Velcade, which can be combined with dex and cyclophosphamide, or sometimes your previous treatment can be repeated, or thalidomide added to Velcade and dex. There might also be some clinical trials available if and when your consultant decides you require further treatment. I hope your further tests indicated everything is OK within your body and that the myeloma is under control. Fingers crossed, you will be able to go away on holiday in January.

    Jan

    #124276

    avrilro55
    Participant

    Thanks so much for this response, very informative. My original light chains were 347 discovered through a biopsy on my octipal bone which was asolitary plasmacytoma.  I have not had a virus or anything wrong with me for about 8 months, the. Only last winters cough etc., guess have to wait and see.  Thanks again for your response. I am under a firstclass team at Addenbrookes, cambridge.w

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