Hi Susie,
I have just had my 30th monthly Zometa today. The side effects for me as David says is the 36 hour flu afterwards this lasts for 12 hours where i feel like iv’e been kicked by a mule. For me its a small inconvenience for the benefits. I have quite a lot of bone damage and the transformation has allowed me to play golf 3 times a week, road cycle 30 miles 2 times a week and walk long distances without pain or discomfort. The interesting thing is the profession in the uk are divided on the anti myeloma properties of Zometa. Below is a quote from myeloma beacon MRC myeloma ix trial 2013
<span style=”font-family: Arial, Helvetica; font-size: 12px; -webkit-text-size-adjust: auto; background-color: #ebeadd;”>”The results of this trial showed that targeting the bone with Zometa as part of treatment significantly improved survival of patients with myeloma. These results show that preventing and treating myeloma bone disease has beneficial effects beyond just controlling bone pain and preventing fractures; it also increases survival” </span>
This survey mirrors an earlier 2010 trial covering 2000 patients. My consultant was going to stop Zometa after 24 months as per hospital protocol. I strongly stated that whatever my current results i wanted to carry on with the Zometa. He had a change of heart and i continue to have the monthly infusions indefinately. For me personally the side effects and additional risk of ONJ are outweighed by the obvious benefits to my bones and the possibility of the anti myeloma properties of the drug.
Good luck with your decision.
Stanley
Hi Richard,
Sorry to here of you current nasty cold. Hope its sorted very soon. I intend to carry on with the excersise especially the walks out in the country. I strangely find the solitude good for the mind as much as the excersise. Glad your also making the most of things while your on 3 month bloods.
Hi Rebecca,
So pleased your feeling so well brilliant news. It must be all that tennis lol. Like you hoping to get 2 years for automatic second SCT although new guidelines state consideration should also be given at 18 months. I have not upped the dosage yet but will start tomorrow now you mention it. My light chains decreased for the first 8 months post SCT then started rising over the last year by small ammounts until the last one which the dropped slightly for the first time. Like you my Kappa is still ok with the ratio just out of range by .02 but on the way down. I had my first infection over xmas and i believe that contributed to a slight raise in Kappa (but not out of range).
best regards to you both,
Stanley
Hi,
When i was sent home from SCT on a Friday i spiked a temperature over the weekend. Phone the ward on The Monday and was admitted immediately. The were VERY unhappy i waited. I was given intravenous antibiotics for 4 days and finally released. With the immune system so low on release the risk is not worth taking. If and when i might be in that position again i would definitely not hesitate next time.
Best of luck,
Stanley
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
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
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
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
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
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
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
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
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
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
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
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
