I am very saddened to hear the news that Ian is no longer with us. You are in my thoughts.

Stanley

Hope your holiday was a welcome break from the myeloma bubble. How is Ian coping on pom? Sorry for the late response due to project managing the refurbishment of my eldest daughters first house (very exciting). I have booked another golfing holiday with the lads to Spain in May and will be in Ireland in August( best man at a mates…[Read more]

Good to hear from you hope everything is well your end. As you say MM is so complex and we are all so different with regards to our journey. With the dissapointment of the appearance of 2 x paraproteins 5 months ago i now find one has stayed rock solid and the other is dropping. So its more golf, cycling and walking on the menu for…[Read more]

Update on the journey. I have just come back from my latest consultancy and the mist has cleared a little over the sudden appearance of 2 paraprotiens. My Doc says after SCT he see’s second paraprotiens in around 10% of patients normally associated with reconstitution of the immune system in the first 12 months after transplant. He stated…[Read more]

I know just how you feel when approaching bloods and consultantcy time. The sense of foreboding appears at bloods and continues right up until the dreaded consultant visit. I book mine for 09:00am so as not to prolong the agony on the day. Three years xmas where has the time gone. You are becoming the mrs A * patient, long may it…[Read more]

Did find the article you have quoted and a few more. The problem when reading them is they seem to appear early after transplant and often disappear after 12 months. I had no detectable PP for 25 months and then the 2 m spikes. I now realise you have to add both the flow measurements to get the actual PP 1.6 fast flow + 1.1 slow flow…[Read more]

Sorry to hear of Ian’s relapse but glad your are happy with the way forward on Pomalidomide. I hope this brings Ian back to a position for a possible second SCT.

All the best to you both,

Stanley

I have just come back from my latest consultancy with more questions about this crazy disease. My relapse from CR with two M spikes ( different clones)  have stayed the same  from suddenly appearing 2 months ago fast flow 1.6 and slow flow 1.1 on the gamma spectrum. No IFE has been done so i am at present unsure if they are the same i…[Read more]

Thanks for the reply. Had the most fantastic time. Stayed out in the sun too much, played golf too much, drank far too much, enjoyed great company too much, spent too much, deprived myself of sleep too much, punished my body too much, but through all that i diddnt think about mm too much ( well not at all really). You were so right about…[Read more]

Great to see you on your travels again and enjoying the odd beverage. Decided to take a leaf out of your book and off to Gran Canaria today for a golfing holiday with the lads. We may also take in a few trips to the local drinking establishments. Well it would be rude not to really. Hopefully your PP’s are on the way down.

Best regards,

Stanley

Not been on for a bit. Please pass on my best to Ian and hope treatment is a long way off.

Stanley

Just a brief update on my journey. I attended a consultancy this week and was told i have a paraprotein reading of 1.1 slow flow from undetectable for 25 months after SCT. The official line is relapse serological asymptomatic. The reading has come out of knowhere. My light chains are still good and all other bloods are excellent. When i…[Read more]

wouldnt paste the quote but here is the article link.

http://www.myelomabeacon.com/forum/zometa-infusions-t3180-10.html

Best regards,

Stanley

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,…[Read more]

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…[Read more]

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…[Read more]

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

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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 d…[Read more]

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

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…[Read more]

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…[Read more]

Liz hope Kev gets through his SCT and a good remission is only…[Read more]

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

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

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…[Read more]

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…[Read more]

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

My sincere sympathy in what must be a traumatic time for you.

In my thoughts,

Stanley

Many congratulations to you and Colin. Sounds like you both had a day to remember.

Best regards,

Stanley

I am so sorry to read of Colin’s response to the latest round of treatment. My sincere thoughts are with you both at this difficult time. Your post has prompted a period of  reflection as a fellow sufferer. May you find the strength you need over the coming weeks and months.

Best regards,

Stanley

I hope Ian is home at the weekend and on the road to recovery. Looking at your comments my journey was very similar. The first period of hospitalisation was 18 days then 2 days home then temperature and rhino infection back in for 5 days then home for good. I lost a lot of weight in hospital and even more in the first few weeks at…[Read more]

Glad your enjoying yourself and still having a few beers. I decided to take a leaf out of your book and resume my love affair with alcohol. Surprisingly the outcome has been very pleasant, so much so i probably overdid it on a visit to Cheltenham races recently. The strange thing about it was i felt as good as ever afterwards with no ill…[Read more]

Ian is finally there for his SCT. I wish him a trouble free passage and the long remission were all after. My SCT is long gone in the memory already,August 2014. For me the focus was always a long drug free period. My thoughts and very best wishes to you both over the coming weeks.

Stanley

I take it all went well with Ian’s harvest. I hope the transplant and high dose process goes as smoothly as possible for Ian. The goal at the end (drug free remission) is that light at the end of the tunnel.

my very best wishes for the near future,

Stanley

Nearly 12 months to the day since my emergency surgery on 4″ plasmacytoma  diagnosis and 6 months post SCT . My consultancy yesterday confirmed no detectable paraprotien and FLC of 10.17 kappa and 7.57 lambda ratio 1.34. I am utterly delighted and feel positive for near future being drug free.

Best wishes to all,

Stanley

I went into SCT with FLC 104 after 4 courses of CTD. My consultant said that the cyclo priming equivalent of 3 courses of standard treatment 1200mm would sort it out. The only side effect i had was a big red head for a couple of hours (my kids did laugh during the skype phone call) and the weight gain due to the fluids. The…[Read more]

I was actually diagnosed with MGUS in 2003 with a PP of 2 and monitored till 2007 when it went up to 4. The initial diagnosis was a shock. As the years of monitoring went on and the final consultancy came in 2007 with the words you may get it when your 70 i resigned myself not to worry about something that may never  happen.The stats…[Read more]

I currently have shingles 6 months post SCT.I just brought the subject up a couple of days ago on my journey for comment. I echo Annette’s comments. Get Pauline to the doctors asap. I came down with it last weekend friday night and waited till monday morning to go to the hospital (bone infusion due). Given antiviral Valaciclovir and…[Read more]

Sorry if i was unclear in my reply. I echo carol’s sentiments with staying at home and reducing contact to prevent any possibility of infection.

Best regards,

Stanley

With the post i was surmising that nearly all of us have had chicken pox before the adult age of 18. You must be very special as the percentage is around 95% who have. I don’t know anyone close to me who hasn’t had it.I was given no medication post 50 days but have just been given a course of  valaciclovir. Was just interested if the…[Read more]

Happy new year to you great way to start 2015 with the fantastic news of your all time low PP’s.With the possibility of SCT on the horizon you must feel positive.I know how you feel about your latest blip was enjoying a great day out at the rugby visiting the guiness tent on a regular basis  two weeks ago after great remission then last…[Read more]

I hope all goes well and it brings you long remission.

Best  wishes,

Stanley

Once you have had your full course of Chemo as per your consultant the final part of the process is a larger dose of chemo which some call a priming. The purpose is to raise the CD34 count in combination with GCSF injections which in turn will assist in the harvesting of as many stem cells as possible. The harvesting process is…[Read more]

I would be interested in comments from other post SCT patients around the subject of shingles. I have just been diagnosed just short of 6 months post.I have read online that 50% of all SCT patients will get shingles in the first 12 months post SCT with the majority of the others within the first 3 years.

Best regards to all,

Stanley

Again thanks for the kind words. I’m determined to lock this away until 6 months post test and if i’m in the same situation i’ll be an even happier bunny. With no drugs for the near future i may partake in more than a few glasses of champers. The positive advice on remissions of others including the 22 year remission is one hell of a…[Read more]

Final chapter of my first treatment journey. I have just had 100 day post SCT results. No detectible PP, normal FLC, zero clonal plasma cells in bone marrow and my 4″ x 2″ x 2″ plasmacytoma on the fifth rib has completely gone via pet scan. This has put me in sCR as defined by current criteria. My consultant described this as…[Read more]