[CarolsymonsParticipant]

Hi Jo
Don’t listen to the horror stories -according to my experience, it is not that bad. I have met a 10 year survivor (a super fit 69 year old cyclist) over at Ealing Hospital, who managed 8 years drug free from his first transplant. Now just imagine that! But….like any treatment with this disease it is so individual and the 2 to 3 years is average…..but I have never been average – I am an A* kind of girl, so I am aiming for the 8 years! Yes I may be disappointed, but if you can’t go into the transplant truly believing it will work, then I would say don’t do it. Remember my life philosophy…”A life lived in fear is a life half lived.” Yes it is a gamble but…..imagine 8 years in remission………with NO DRUGS………

Carol

[CarolsymonsParticipant]

Hi Joe
I am just 22 days post transplant and while it is not a pleasant process and I am still fighting the side effects (fatigue, nausea and vomiting) from the melphalan (high dose chemo) it hopefully will be worth the week or so of suffering for a long remission. But, like everything else with this unpredictable disease, even the SCT is a gamble.

Carol

[CarolsymonsParticipant]

Hi any
Which company do you recommend for travel insurance?

Carol

[CarolsymonsParticipant]

Hi Angela

Good to hear -so far so good….but be prepared the worst is yet to come!

Carol

[CarolsymonsParticipant]

Even Australia is using Velcade for front line treatment, but here in the UK, from my experience you have no option but CDT for initial therapy. The only reason surely is its cost as Velcade has been proven as more effective. Yes you can join a trial and get Velcade, but when I researched that option and asked to be referred my consultant was against it, saying most people responded to CDT. Even the trial to get Velcade is not researching its effectiveness, but whether by using Velcade you can delay SCT. As I relapsed after 3 weeks off CDT, I regret not pushing harder for a referral to the trial, but at the time I was a novice and believed the consultant. Now I know better -he was just following the standard line of treatment. I still believe my lambda light chains may well have been reduced with Velcade, whereas CDT did little for them. Maybe, with Velcade I could have avoided SCT????

Carol

[CarolsymonsParticipant]

Isn’t Violet just beautiful? I haven’t enquired about immunisations. I think they expect you to re-do all the baby ones but I don’t know when. I am seeing the consultant next Wednesday so must remember to ask.

Carol

[CarolsymonsParticipant]

Thanks Stuart

Carol

[CarolsymonsParticipant]

Try try again!

[CarolsymonsParticipant]

Try again!

[CarolsymonsParticipant]

Hi Nicki

Yes SCT is a big decision, but I saw it as a gamble but one worth taking if you can be in remission and drug free for a few years. I know a patient at Ealing Hospital who managed 8 years from his first transplant, now wouldn’t that be fantastic? Really I had no choice but to do the SCT. 3 weeks after finishing CDT my paraprotein was back and lambda light chains increasing, so I was already slipping out of remission. I know some people have the luxury of finishing CDT then staying in remission, but not me. Also I really, really, really want to go home to Australia, but with dual citizenship knew my best care would be here in London. I am with Hammersmith Hospital West London and I cannot speak highly enough of the institution. The staff are inspirational, I felt blessed to be in their care.

Attached is a photo of my newest grand daughter who I have never seen- just 5 months old and named Violet, my second name and my grand mother’s name….how sweet is that? You can see how much I am missing by being in London.

Carol

[CarolsymonsParticipant]

Hi Nicki…welcome!

I can’t help you with the Igm myeloma as I am iga lambda light chain which is also a more rare form of the disease. However I can give you hope. I am 15 days post stem cell transplant (SCT)and doing very well I feel. I am hoping for a long remission, but of course nothing is guaranteed in this process. I can say though if SCT is offered to Kevin (although his kidney and diabetic issues may limit this) there is no need to be afraid of the procedure. Fingers crossed for myself that I will achieve a long remission and return to my family in Australia this year.

Carol

[CarolsymonsParticipant]

Well done Richard! I came home last night- the doctors had a bit of a struggle ripping out the Hickman line and had to cut out the cuff in the end, so I have a stitch and am a bit sore. Now day 15 with very few restrictions on food…fruit and salad OK..no undercooked food, blue cheese, cold shellfish or takeaways. I have cooked and managed to eat a mushroom omelette for breakfast and salmon, roast veggies and kale for lunch/dinner and so far all has stayed down-bonus! And it even tastes good! When I was on CTD nothing pleased me but the melphalan has not damaged my taste buds like I expected. Mind you I really need to lose some weight and plan to get out walking, starting Monday. Difficult here as the weather is sooooo dreary. Oh I wish I was back on the beach in Australia! Planning to have recovered, be in remission, taken ill health retirement, sold up flat and car in London and be winging my way back to Australia by the end of July…..well that’s the plan anyway. You know the saying…” The best laid plans of mice and men…..” or something similar……

Carol

[CarolsymonsParticipant]

Hi Angela

I am home and happy, happy, happy!

Carol

[CarolsymonsParticipant]

Hi Angela

I wouldn’t rush to have Graham home just before he goes neutropenic, as they were my worst days with the oesophagus problems and diarrhoea!

I am going home today (day+14) right slap gang into the middle of London traffic with the tube strike.

Having said that it is now nearly 4pm and I have to have 1 hour of platelets before they rip out the Hickman line, then there is always a hold up waiting or the pharmacy to deliver the take home drugs so…….at least we will miss the peak hour mess on the A40!

Carol

[CarolsymonsParticipant]

Forgot to mention the “dry mouth” issue also caused by mucositis….it is driving me crazy -oh and yesterday and this morning, my nose is dripping like a tap and my eyes watering. I think it is just my body’s attempt to start to repair the chemo damage, but it is annoying. It is sip,sip,sip endlessly and drip, drip, drip continuously…now you know if I am complaining about such minor side effects it really is time to pack up and go home?!

Carol

[Author]

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