[stanley-1960Participant]

Hi Carol,

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 vast majority on this site have had chicken pox and the data that shows were all most likely to get shingles if anyone was on a preventative strategy or if they were advised that it was likely to occur.

best regards,

Stanley

[stanley-1960Participant]

Hi Andy,

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 Friday laid up diagnosed with shingles monday. I diddn’t know guiness could do that to you. I will revert back to the lager in future.Lol.

Best regards,

Stanley

[stanley-1960Participant]

Hi Noel,

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

Best  wishes,

Stanley

 

[stanley-1960Participant]

Hi, Alan,

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 expensive so they will normally not go ahead unless your CD34 count 10 or more. Mine was 11 but was given Mozobil to aid further which brought my CD34 count to 98. In the end for me because my count was so high on the harvest day i only needed one 6 hour session which yielded 11.2 million. It will also helps with reducing the myeloma proteins before SCT.My neutrophils after priming were still around 3 (2-7 normal range) but it did reduce my white blood cells to just below 1 (4-11 normal range) but after GCSF injections and mozobil and before harvest my counts were WBC 9.2 and neutrophils 6.5. So in my case the most important marker neutrophils were normal all the way through. When you go into hospital to have High dose melphalan thats when your neutrophil and all other cells will be completely wiped out and will be at risk. Some hospitals will send you home after melphalan for a few days until you bloods start dropping and some will keep you in. Your release will depend on a lot of things but however well you feel you should not be released until your neutrophils rise above 1 once your stem cells start grafting.

Best of luck

Stanley

[stanley-1960Participant]

Hi to all,

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

[stanley-1960Participant]

Hi Rebecca,

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 target to aim for. Taking a leaf out of your book we should all dare to dream wherever we are. It is so individual.

I hope you are well.

Stanley

[stanley-1960Participant]

Hello again to all,

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 good as it gets. I am very grateful and consider myself very fortunate in what is a very unpredictable condition. I have been randomised to the placebo arm of Revlimid maintenance. After reading  extensively on the pro’s and con’s i am not too disappointed as i had a difficult decision to make if i was randomised to receive it. I would like to take this opportunity to thank everyone who has took the time to respond to my posts in what was a very difficult period post diagnosis, especially Rebecca who encouragement and  sound advice has proved a real tonic.

Best wishes to all,

Stanley

[stanley-1960Participant]

Hi,

I had 4 courses of CTD. After 2 weeks came out in a similar rash. Stopped allopurinol and co-trimoxozole(teamm trial) and problem solved. I was put on dapsone as a replacement for allopurinol with no problems. Is your husband taking either of them?

regards,

Stanley

[stanley-1960Participant]

hi all,

Just had another bmb yesterday for post 100 day SCT. I must admit it was done in the clinic by a woman doctor and was the least uncomfortable ive had yet. The worst bit was the local. She said the trick was to get the local to the surface of the  bone ?. Seemed to do the trick or it may have been her technique thats what she said lol.

Regards to all,

Stanley

[stanley-1960Participant]

Hello to all,

Just an update on my journey. Went to see the consultant today +77 days SCT FLC Kappa 12.21 lambda 7.33 ratio 1.66. My initial kappa reading pre treatment was 4120 with a ratio of 527. I am awaiting PP but he said based on FLC  it should be very favourable (pre cyc infusion and SCT 0.54). If my plasmacytoma has gone(due pet scan in 3 weeks) and BMB shows the same progress with plasma cells (started with 10%) could i dare to dream of sCR. On a more negative note still got a rash on torso,arms and back of neck( like itching heat lumps). At the moment a small price to pay.

Best wishes to all,

Stanley

[stanley-1960Participant]

Hi Michele,

What an inspiring post.I am so pleased for you.

Best wishes,

Stanley

[stanley-1960Participant]

Hi Chris,

Sorry you find yourself here. I was diagnosed earlier this year and completed 4 cycles of CTD followed by STC in August. Unlike yourself i found CTD not too bad apart from the usual issues a few days of hiccups a bit of pain when taking the cyc and the ramblings on the dex. Oh ! And the bowel movement (or lack of it) . I never lost my sense of taste even through the SCT process. I do hope CTD this time around is problem free and you move on to SCT. I have had great encouragement on this site especially from Rebecca. The treatment is doable even SCT which was bit tougher for me but i now find myself through round 1 as Rebecca says. My very best wishes for the future.

Stanley

 

[stanley-1960Participant]

Hi Denise

I had 4 cycles of CTD and after taking the first course( a day after each cyclophosphamide intake) had severe rib and back pain. I was told by the consultant this was a good sign it was working on the plasma cells in the bone. I have a plasmacytoma on the 5th rib.The pain eased off with each cycle to the point i had no issues on cycle 3 and 4.Best wishes to hubby on the journey the PP results after 2 courses look very promising. After 4 courses my readings put me in complete remission( apart from the tumour) so for some CTD can work wonders.Good luck for Friday.

Stanley

[stanley-1960Participant]

Andy,

Well done on your third anniversary. It must be the drink and Greek holidays. here’s hoping for many more.

Stanley

[stanley-1960Participant]

Hi Graeme,

Sorry not to reply to your post not been on for a while. I have just completed SCT. I was in for 18days home for three and then back in for three days with a simple rhino infection. The most important thing for me was free internet to access television via ipad. As Rebecca has said oral hygiene with the support of the mouthwash is important. For me the sickness and constant nausea was extremely difficult. I had a permanent driver delivering anti sickness plus oral tablets in various combinations which improved the situation slightly. The diarrhoea was manageable up to a point. Then after several mishaps in a short period of time where there was no sensation of the impending movement i relented to the nappies provided( a definite low point).For me the long periods of boredom were not a problem as i felt ill and tired throughout the period. My wife brought some nice chocolate and other nice snacks which were virtually untouched throughout. Be prepared for constant observations(every 4 hours) and bloods via your line. Also when i was at my worst constant drips (saline,heartmans and anti biotics). I was given magnesium several bags of platlets and bloods to aid recovery once i flatlined (neutrofils zero). Not being able to leave the room does give the stay a feeling of cell block H and the temperature in my room was based on the air flow which was directed to flow out of the room via the door(pressurised). So yes a little cold at time. I have stated in my posts CTD was easy for me ( 4 courses) but this was a different proposition. But we are all different and this experience was just mine. The worst part of the whole process was line in( bard line right side of chest) and the most pleasant experience was the harvest of stem cells( a walk in the park). The very best for your SCT.

Stanley

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