[stanley-1960Participant]

Hi Maureen,

Great to hear Ian had a lovely day and those FLC’s are still check. Copenhagen and Bermuda sounds fantastic.

Best wishes to you both,

Stanley

[stanley-1960Participant]

Hi All,

Just thought i would update my current situation. Its now over 2 years since my emergency surgery to remove a 4″ plasmacytoma from my chest and 19 months since SCT. All my readings were normal at recent consultancy with the news that i am being moved from 2 monthly consultations to 3 monthly. In the 19 months since SCT i have had 2 infections/ heavy colds, but in my defence so have my family for the same ammount of time so not all that surprising. I walk 14km every day, play golf as often as i can, drink in moderation and travel as often as i can( off to Barcelona next week). I have just turned 56 years of age and hope to see a few more yet.

Best wishes to all,

Stanley

[stanley-1960Participant]

Hi Lyns,

I had auto stem cell in August 2014. While in hospital i has a rash covering the upper torso only including scalp and arms. When i went home this got worse especially on the back ,neck and scalp (rear). The discription of the rash would be maculopapular (dry small red flat spots with raised lumps). Essentially it felt like hundreds of heat lumps joined together causing agitation all the time.This eased off after a month with no specific treatment. I finally got a consultation with a dermatologist (it had nearly cleared up) who thought it looked like mild GVHD and was given a simple menthol cream to help with the itching (probably because it had nearly cleared up).Although GVHD is more associated with allogenic stem cell transplant it can occasionally affect autologus transplants. My own haematology consultant was more dismissive and gave the cause of the rash as unknown(as GVHD is not commomly associated with autologus stem cell transplants). A sample of the rash was taken at the hospital and was found not to be fungal. I still get isolated heat lumps on same areas from time to time but they will completly dissipate after 3 days.

Best regards,

Stanley

[stanley-1960Participant]

Hi Andy,

Great to see you progressing and on the mend after the very tough time lately. Every time you mention the demon drink it brings a smile to my face. Im moderating my consumption at the moment but have a big trip coming up where my constitution will be severely tested. As i always say to my mates this ain’t no dress rehearsal. I look forward to many more posts on your continuing progress.

all the best,

Stanley

[stanley-1960Participant]

Hi Rebecca,

The key to taking curcumin  is how do you get it to absorb into the body. When selecting a product Bioprene ( a black pepper derivative) aids in the process. Otherwise you need to take it with pepper, pineapple or papaya. I have looked on the net and found Pureclinica the best value for my needs. I originally bought one bottle to try and had no ill effects so then bought a batch of 4. It does contain magnesium stearate (a binding agent) that gets mixed reviews but i believe its used in most tablets. Dr’s Best gets good reviews but has the same ingredients as Pureclinica’s the difference being 120x1000mg @ £43.94 and 180x1000mg @ £18.99 respectively i’ll let you do the maths. The pureclinica is manufactured in the uk with the only allergen information stating that it is made in a facility that processes milk,soya,egg proteins,glutens and peanuts.

This is a recent article associated with different subgroups/chromosomal disorders.

http://www.tandfonline.com/doi/ref/10.4161/15384047.2014.986997

I hope you are well and still knocking a few over the net.

All the best

Stanley

[stanley-1960Participant]

Hi Phil,

For the last 5 months i have taken 2 x 1000mg per day of double strength curcumin. Each tablet contains 950mg of curcumin and 5mg of bioprene. I have been thinking of upping the dose to 4 x 1000mg per day. The cost is the best i have found on the net. I just paid for 4 bottles @ 180 tablets  per bottle for £18.99 each. If i took 2 per day that would last a year for a total cost of £76. As far of benefits are concerned i have had no infections or sore throats since SCT no adverse effects and i feel it has benefitted my digestive system. As far as anti myeloma is concerned i have not got a clue like everyone else. The dosage was based on the maximum 8g(you did mean 8g and not 8mg Phil) that is mentioned on various forums although i think its particularly difficult to overdose on it.

Best regards,

Stanley

[stanley-1960Participant]

Hi Mervyn,

Glad your ok after SCT long may it continue. You must be a clairvoyant as currently i’m playing golf,doing up the bathroom and gambling on the horses with varying amounts of success with each lol.Don’t have any grandkids else i’d probably be looking after them as well.

Stanley

[stanley-1960Participant]

Hi Rebecca,

Funny you should mention the word “norm” as its never been in my vocabulary lol. I don’t see it as a brave decision but one that had to be made.Leaving work for me has been an extremely traumatic experience. Adjusting to the new changes will take some getting used to. The difficulty for me was the fact that i enjoyed every day and was committed 100%. The void left will hopefully be filled by some travelling to places iv’e never had the chance to go because i was too busy working. I am trying (without much success) to stay in the light as you advised but going through the my working life is over phase (woe is me) coupled with the myeloma shadow is making it a testing time at the moment.Great to see you and your husband have been doing some re-evaluation. There is more to life than work and i am hoping to realise this over the coming months. Hope you are well.

Stanley

[stanley-1960Participant]

 

Hi C,

You are totally right to have a rant. With the worry leading up to your consultancy for them not to have a key result is simply not acceptable. My experience while going through therapy and waiting for results was PP readings would not be available with bloods taken on the day. So i went to my local chemist as directed a week before the consultancy to have bloods taken. They were still not available on consultancy day (a complete waist of time). I now have to have my bloods taken 2 weeks in advance to ensure the paraprotein element is available for discussion at consultancy. You are not alone.

My rant over.

Best regards,

Stanley

[stanley-1960Participant]

Many thanks Ann and Liz, off to Cornwall soon will have a few pints of rattler cider and it would be rude not to accompany it was a pasty. Not near a golf course but will be yomping around the coast like a goodun. As long as i keep away from the shops I’m sure i have a great time.

Liz hope Kev gets through his SCT and a good remission is only round the corner.

best regards,

Stanley

[stanley-1960Participant]

Hi Maureen,

Ian’s free light chains at 3 months is fantastic news. You must be thrilled. Please pass on my best regards to Ian. Have a great time in Ibiza.

All the best,

Stanley

[stanley-1960Participant]

Hi Avril,

It would solely be your consultants decision but if he followed the recommended route as per guidelines then yes. On the age for SCT my local hospital broke their record last year 78 year old. He must have been as fit as a butchers dog.

Best regards,

Stanley

[stanley-1960Participant]

 

Hi Potterman/Avril,

Below is the link to the pathway. Velcade is normally used as a first relapse treatment (second treatment) or as a first line treatment if thalidomide could be harmful or the patient is unsuitable for SCT. The link is the NICE approved standards for treatment. Velcade was removed from the CDF fund for specific second use for relapsed patients who had already received it and had responded for 6 months. In that particular scenario it is no longer available.

http://pathways.nice.org.uk/pathways/blood-and-bone-marrow-cancers

Avril like yourself my initial treatment has been CDT followed by STC and my consultant assures me when my relapse comes he has indicated my next avenue will be Velcade as per pathway.

Best regards,

Stanley

[stanley-1960Participant]

Hi All,

Just returned from latest consultancy nearly 13 months post SCT. Normal FLC and no detectable paraproteins. Panic over for another 2 months (always the pessimist). My consultant was shocked when i said walking 14km most days  with some days stretching it to 23km. First round of golf last week for nearly 3 years, too many 3 and even 4 putt holes 🙁 but still scored 27 points stableford. On a more serious note finally gave up work. Now looking for my place on the scrapheap of life(currently at the bottom) but hoping for a good season aiming for mid table by early next year.

Wishing you all the very best,

Stanley

[stanley-1960Participant]

Hi Eve,

Glad you took the time to post and update us all on the next chapter of your life. So pleased your managing to live your life with so much positivity. Im sure Slim would be very proud of you.

Best regards,

Stanley

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