[CarolsymonsParticipant]

Hi Rebecca

My hair isn’t actually that long, maybe 2 inches like yours. I have neither owned nor used straighteners having just a slight wave in my normal hair, so wouldn’t know where to start even! I wore a wig until the last week of school when it was too hot to be bothered, so went with my short curls. Some people at work even said that it suited me, but I think they were just trying to be kind! It is funny that as I am wearing glasses now as well, (thank you steroids for worsening my vision) 2 people I know locally have not recognised me! Don’t know what my family will think when I eventually return to Oz. Still waiting for the bloody contract for my flat so I can book my one way ticket out of London….almost 5 months now…stupid Real Estate system in this country I reckon.

Carol

[CarolsymonsParticipant]

I have to fight to get my results between appointments at Ealing Hospital, west London. I have been told they cannot give them over the phone, but when I do go in to collect them there is still a reluctance to print them out. 4 weeks is too long to have to wait when you are anxious about this bloody cancer returning……after all it is my body, my blood and MY results! Soooooo annoying!

Carol

[CarolsymonsParticipant]

Wow Tom I can’t believe a year has passed since your transplant! I am 5 months post transplant now and still in remission, although I haven’t got the latest blood results. I went back to work at 3 months on a phased return, now full time although school finishes on 18 July when I hope to return to Australia. I am, however, still waiting on the contract for the sale of my flat before I resign and book my one way ticket out of London. Good to hear you are doing so well. I too feel pretty good, still have occasional days when I feel really fatigued, but mostly life is back to normal. As you say long may it continue for both of us.

Carol

• This reply was modified 10 years, 5 months ago by  Carolsymons.

[CarolsymonsParticipant]

Try not to read too much on the internet as things are advancing rapidly in myeloma treatment and consequently survival rates. I read of people still alive after 22 years! Nowadays I think we have to regard myeloma as a chronic disease. We have period of remission then a relapse and back into treatment in recurring cycles. Also the average 5 year survival has to be viewed in the context of this often being an “older person’s disease” so very often patients, when diagnosed, have other health issues which naturally impact on survival. It seems that infection is what takes you in the end, as with MM the ability to fight infections is compromised. It is now 15 months since I was diagnosed, 5 months since my stem cell transplant and I plan to be around for many years yet! Fingers crossed!

[CarolsymonsParticipant]

At 4 months post transplant last month I flew to Serbia then took a road trip to Croatia to escape the floods in Serbia and Bosnia. I had no problems, although like you I have no stamina for walking. Need to work on fitness but can’t find the energy after a day at work.

Carol

[CarolsymonsParticipant]

Hi Jane

I don’t think people like Rebecca and me, who cruise through transplant have any idea of how much you must have suffered. That you have come through with such a positive outlook is fantastic! I hope things continue on the up and up for you. My darn hair is only about an inch long (5 months after transplant) but it is already trying to curl! I have been out twice without my wig, but wear it everyday at my job in a school. I think I would frighten the kids if I appeared with my current grey twisted mop!

Carol

[CarolsymonsParticipant]

Hi Denise

I think sometimes it is even more difficult for the carer than the patient. I know my husband told me I was quite obnoxious while on steroids, but I just thought I was telling it like it was! It must be awful to be told your loved one has an incurable cancer but I think I was so involved in getting through the treatment and the side effects, I just had no strength left to deal with his issues. Thankfully 15 months later he is still around and I am (so far) 5 months after transplant in remission. Let’s hope it lasts!

Carol

[CarolsymonsParticipant]

Hi Mary

I take curcumin capsules that I bought over the internet from Cytoplan. When I checked with the consultant he was fine with it, said something like “Well if I have patients I cannot cure, why would I object to them taking something alternative?” Not sure how effective they are, but there seems to be some research showing they work. I am only taking 2 capsules a day, probably should be more……

Carol

[CarolsymonsParticipant]

Hi

The only issue I had with collection (mine was done with etoposide not cyclophosphamide) was pain from the Neupogen shots. It was so bad I even had to take painkillers which I never normally need. But…..they say no pain, no gain and I gave them 15 million cells per kg after 4 hours on the machine. They did insert a Hickman line prior to collection too, so it was all very easy in my case. I did lose hair though, in patches after the etoposide. Oddly though I didn’t lose any more hair after the melphalan prior to SCT……but by then I had already had it clipped as it was looking moth eaten after the etoposide.

Carol

[CarolsymonsParticipant]

Hi Wifeof?

I was discharged on day 15, but luckily came through the SCT with no infections or other complications. I was also told to expect 4 weeks incarceration! Thank goodness that didn’t happen.

Carol

[CarolsymonsParticipant]

Hi Nicki

Yes I had the dreaded biopsy at day 100….bloody painful too as she went in 3 times after adding more local anaesthetic…..ouch! The biopsy previously before collection was a breeze….different doctor! So the biopsy showed less than 1% cells which confirmed the blood test results. Had another blood test last Friday (today it is exactly 5 months since transplant) so anxiously awaiting results which should be back Thursday.

I cannot wait to be back home in Australia!

Carol

• This reply was modified 10 years, 5 months ago by  Carolsymons.

[CarolsymonsParticipant]

Hi

I was also really ill by the last cycle of CTD…in fact those drugs made me sicker than the melphalan in the SCT. I was dizzy, weak and breathless but didn’t have fluid retention. I did develop tachycardia (rapid heart beat) but that has now settled finally. Tomorrow it will be 5 months since my SCT. I have been back at work for 2 months and recently travelled to the Serbian Republic and Croatia on holiday (photo is in Croatia) so you see there is life after transplant. Had another dose of bisphosphonate yesterday and another blood test, so should have paraprotein and light chain results back next week. I feel OK though, so hope I am still in stringent complete remission. Hoping to retire and return home to Australia when work at my school finishes on 18 July. Don’t be frightened, there are a lot of us survivors on this forum. When I was diagnosed, my consultant said that if you have to get cancer, this is a better one as it is manageable! Not very reassuring at the time, but I understand his point of view now, 15 months on.

Carol

[CarolsymonsParticipant]

Wow he has done really well. I still think the SCT is like giving birth….you ignore the horror stories and approach it positively hoping for the best. I am almost 5 months post transplant….blood test today, so hopefully results will still be good when I get them next week. I was in stringent complete remission at day 100 post transplant, so hope it stays that way for a long time! Just a few more weeks at work, then I am returning home to Australa…..can’t wait!

Carol

[CarolsymonsParticipant]

Thanks Mavis

I stil have a bit of a rash….may be from the sun? I think I read you should be more careful in the sun after chemo. As I am planning to spend lots of time on the beach when I return to Australia, avoiding the sun will be a problem.

Carol

[CarolsymonsParticipant]

Well done Keith! I am in stringent complete remission too after my transplant in January….paraprotein undetectable, zero cells in biopsy and normal light chain ratio. But….like you it is still fingers crossed that I stay in remission, unlike after the CDT when my numbers started rising after 3 weeks! Guess the melphalan is a tad stronger than the CDT!

Carol

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