[stanley-1960Participant]

Keith,

Great to see your up and about and the main symptoms of post transplant seem to have Subsided. Just need to force that food down to get the weight back on. I was wondering how much you have lost over the course of the SCT process to date. I’m on day 13 of my CTD first cycle and am eating like a horse, don’t know if thats the norm.

All the best,

Stanley

[stanley-1960Participant]

Hi Rebecca/Eve,

I believe both your views make a lot of sense when it comes to the potential effect on moral if the answers to the questions might not be what you hoped to hear. I believe that within all the facts and figures GP’s have an incredibly difficult balancing act to provide critical information without deflating the patient or carer. I personally have overdosed on the myeloma beacon and every other article published tom,dick and harry. For me it has helped in the first months with the odd setback when i don’t like certain results or prognosis.With regards to cytogenics what i find puzzling is that certain translocations and risk rating can be reduced by the use of certain drugs. There is very strong evidence that t(11-14) intermediate risk if treated with Veclade specifically would change the risk to standard and the associated prognosis accordingly. If my consultant has started my regimen without consideration to fish array results it could be doing me more harm than good. I have a plasmacytoma and clearly most reviews online indicate thalidamide is ineffective in the treatment and certain articles state it actually assists in growth progression. With regards to tailoring ones treatment as in the states i am very lucky to be in BUPA and have limited options open to me so a little research  and probing questioning may influence the direction i may go moving forward. I will be taking both your advice on not pushing for further information on my lesions as he was very reluctant to tell me the exact  amount but will console myself that my first bone infusion will take place on monday.

Eve I confess to being clueless as to how to move forward as a carer. I could only hazard a guess that if as the carer you ensure you receive all the information on then decide what is appropriate for Slim (as you know him better than anyone). But then in turn who protects you from unwanted information and the effects it may have on you?

Best regards,

Stanley

[stanley-1960Participant]

Graham,

I am newly diagnosed and prior to my first official induction therapy session i made it very clear that i would require all my results for self evaluation and progress monitoring. I read and prepared prior to the consultation and the exact words of the consultant was you seem very well prepared. As promised i received a full set of results via print off only awaiting IFE and SPE from the lab. I am due to return for a follow up and will press for fish array as a matter of importance(don’t even know if its been carried out) but i will press in the strongest terms. I am sorry your have had such a torrid time getting what should be yours by right. I also find it incredulous that GFR which is fundamental to the disease was denied.

Best regards,

Stanley

[stanley-1960Participant]

Keith,

Reading your posts i think you have done tremendously well. I hope you continue to get stronger by the day. I am interested in one comment you made about going home for the first week before returning to hospital. Is this an option offered as standard or a decision you took yourself.

Best regards,

Stanley

[stanley-1960Participant]

Keith,

Many thanks for the the kind thoughts. I have been on the CTD for a week now and have had no more pins and needles just severe pain in the chest and shoulder. I have been told this is a good sign of the tumour reducing. I cant believe how much the swelling is reducing after only a week. I sincerely hope your SCT brings you a long remission.

Best wishes

Stanley

[stanley-1960Participant]

Jeff,

What i meant was identifying  and understanding my individual results. This i’m Trying to do via research and reading the forum. Then when i meet the consultant i can question him on my progress i have made in those areas. If you look at my kappa reading and ratio they are extremely high (I would be interested if anyone registered here has had a higher one) but my consultant tried to skip over this . I will be better prepared for my next visit in 10 days. In closing i am at the start of journey if CTD is not progressing i have the  option to challenge the use of other drugs not offered at initial stage as i am very lucky to be in BUPA . I have chosen the NHS based on advice from forums but have already spoke to my consultant on day one about drugs paid for like revlimid covered on my policy. The comments were personal to me don’t worry Jeff you have not missed anything.

Richard

I would not qualify for your lived in melton group but could be invited as an associate member due to the frequency of my visits to great relatives of my wife.

Best regards,

Stanley

[stanley-1960Participant]

Hi all,

I’m on day 2 of CDT and hiccups have just begun . It is sporadic at the moment hope it tails off they seem to come out of the blue and come from me boots. Not helpful with the recent chest surgery and associated tumour but hey Ho ! No other effects so far.

Best regards

Stanley

[stanley-1960Participant]

Richard/ Rebecca,

Took your advice and phoned the helpline she confirmed kappa very high in the thousands but she has seen this before and treatment will lower this. I have lots of positives in most of my results so just need to concentrate on the couple of areas of concern. Rebecca i am already looking forward to better days ahead after treatment especially Cornwall for beautiful scenery and costal walks and Greece for a stress free relaxing time (think wife will need it more than me).

Richard i was fascinated by the melton mobray thread i have just got back from a weekend with relations who have lived in melton for quite a long time. They build and extension 10 years ago and the concrete floor had to have a gap in it due to the presence of radon. All seems very suspicious.

Best regards,

Stanley

[stanley-1960Participant]

Tom,

Many thanks for the reply you seem to be an inspiration to many on the site me included with your no nonsense approach and mega positive attitude. I’m very lucky at the moment 4 weeks post thoracic surgery my employers and especially my senior manager are totally supportive whatever this is going to take. I’m budgeting a similar timeframe if all  goes well. Good luck with the veclade hope it works for you Tom.

Best regards,

Stanley

[stanley-1960Participant]

Ali,

Many thanks  for the kind comments, i afraid i am waiting till Tuesday at the earliest for the start later if its trial 3 with a drip. I hope you mum’s survey is done asap and she gets seen promptly. I have started to give this disease greater thought with regards to others closest to me especially my wife and the burden i may be to her. I have started to read previous posts and hope to draw on past experiences of others to assist.

kindest regards,

Stanley

[stanley-1960Participant]

Rebecca,

Many thanks for you positive outlook. I’m really pleased you are feeling better after you treatment. Your comments are of great comfort and have given me a boost in what has already had more ups and downs than the lift operator at the Savoy. I’m afraid getting my head round this more advanced stage is proving a little more difficult then the MGUS diagnosis all those years ago. I must of took the consultants comments of you might get it when you are 70 too literally.    I am desperate to start the treatment and must admit to a little frustration in the time it’s taking now not till Tuesday next week if it’s oral or even later if is’s IV Carfilzomib (no beds). Once again many thanks for your best wishes and i hope your better health continues for a very long time.

Kindest regards,

 

Stanley

[stanley-1960Participant]

Ali,

I have just had it confirmed i have a plastacytoma of the fifth rib. I am on the start of my journey and have given a brief history of my story so far in the newcomers section. I will update progress as soon as i start my treatment which will be  hopefully today or tuesday at the latest. I’m very sorry to here about your mum and hope she gets treatment asap.

Best regards,

Stanley

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