Myeloma Forum | CarolZollo | Activity https://forum.myeloma.org.uk/members/CAZ1/activity/ Activity feed for CarolZollo. Thu, 23 Apr 2026 05:50:41 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 8262c684577b6fdc1658c5634926341b CarolZollo replied to the topic medical alert in the forum General http://www.myeloma.org.uk/forums/topic/medical-alert#post-94248 Tue, 22 Jan 2013 15:37:14 +0000 Hi Phil
I have a Medic Alert bracelet, which also comes with a small credit card info leaflet.
My reason for using this system is that the bracelet clearly displays my diagnosis, stem cell transplant ,risk of GVHD ( graft versus host disease if given non- irradiated blood) and my allergies.(11 words total) with my registration number in the UK…[Read more]

]]> 2bde0ce3d8bfdb0b354bdc074b57a01b CarolZollo replied to the topic Just been diagnosed with Myeloma in the forum Newcomers http://www.myeloma.org.uk/forums/topic/just-been-diagnosed-with-myeloma#post-87180 Tue, 22 Jan 2013 15:18:33 +0000 Hi Susan

Welcome to the discussion group. Although I haven't been on here for a while I can vouch for the valuable support that being able to air concerns with others can bring when facing daunting situations like you are.
I have MM, had 4 cycles of CTD before my Stem Cell collection and transplant in April last year. Being 9 months 'down the…[Read more]

]]> 4949c4f72d749475f83d68be8aa6c25f CarolZollo replied to the topic Just Diagnosed in the forum Newcomers http://www.myeloma.org.uk/forums/topic/just-diagnosed1343043725/page/4/#post-86347 Fri, 03 Aug 2012 14:29:56 +0100 Hi to you all and to Charlie(welcome to this lovely support group) for starting the discussion.
Haven't been on for a while as am in the phase of recovering from stem cell transplant 14 weeks ago. It is an interesting journey but have learnt to take it slow, especially as the SCT slowed down the recovery I was making from a fractured leg last…[Read more]

]]> 25b02c8422a8a9c865b9a3887120be6a CarolZollo replied to the topic 10 week check up since STC in the forum General http://www.myeloma.org.uk/forums/topic/10-week-check-up-since-stc/page/2/#post-89908 Tue, 15 May 2012 10:50:38 +0100 Thanks Tom
I don't know what happened and how my post got to the middle-gremlins in the system?
Today feels better than yesterday even though I have to do the nebulizer at the Hosp this afternoon.Perhaps my cough might go as a result– we can only hope!
Carpe Diem
Carol x

]]> 1cebb18e54299dbb05592b0ee081571c CarolZollo replied to the topic 10 week check up since STC in the forum General http://www.myeloma.org.uk/forums/topic/10-week-check-up-since-stc/page/2/#post-89901 Mon, 14 May 2012 17:19:48 +0100 Hi all,
Just catching up with everyone! It's now 3 weeks since my Transplant. On Friday it will be my birthday and also my 1st month birthday! I've been at home just over a week and am feeling very weak – husband doing all the caring ( bit of a shock for him how much I need at present ) -however I can feel a slight improvement each day and the…[Read more]

]]> 07a16a2134c8f537b974b642142b0881 CarolZollo replied to the topic Dexalicious... in the forum Side-effects http://www.myeloma.org.uk/forums/topic/dexalicious#post-104408 Mon, 19 Mar 2012 23:25:16 +0000 Hi Guys
The trouble I have had with Dex has been the weight gain,especially around the face and upper abdomen (and it's not all chocolate related). Luckily that is going down now I have finished my CTD but the muscle atrophy is a problem especially as I am still trying to get over my broken leg from 10 months ago and need to be exercising before…[Read more]

]]> 177bb63e93328910228bc4d2b4e57fa7 CarolZollo replied to the topic another newcomer! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/another-newcomer/page/3/#post-85193 Mon, 19 Mar 2012 22:59:55 +0000 Hi everyone, I haven't posted on here for a while as I had been busy building up to my stem cell harvest 2 weeks ago,which then clobbered me for a week or so afterwards with just the enormity of the whole thing and the physical after-effects.Luckily my GP is good and put me on mild anti-D's to calm the nerves.
Luckily the harvest was good with a…[Read more]

]]> d2e3067a29282b55bcb815e274c20003 CarolZollo replied to the topic Travel insurance in the forum General http://www.myeloma.org.uk/forums/topic/travel-insurance1327064755/page/2/#post-92085 Mon, 27 Feb 2012 23:08:25 +0000 Hi Linh

Glad to be of assistance! I tried almost everyone recommended before found World First and agree with all your comments about their helpfulness. They even insured my mother-in-law when we took her Spain last Easter for a very reasonable amount.She had been refused insurance by other companies, just because she had got to the cut-off age…[Read more]

]]> df00e1096fc70f7aaa1938c463b04b52 CarolZollo replied to the topic New Comer. in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-comer#post-85530 Sun, 19 Feb 2012 00:27:21 +0000 Hi Tina and everyone
Sorry you had to join the 'merry' band of dancers with Myeloma, but hope you find,like me,that the support through the discussion group is invaluable.
I start the build-up to Stem Cell collection this Friday coming,with planned admission, fingers crossed, for SCT on either 10th or 16th April. The good news is that,if…[Read more]

]]> ebef76a23d04fe4147261357507a8b56 CarolZollo replied to the topic Coming off CDT in the forum Side-effects http://www.myeloma.org.uk/forums/topic/coming-off-cdt#post-104373 Mon, 13 Feb 2012 22:15:48 +0000 Hi Peter and Welcome,
I too came off CDT 2 weeks ago and initially felt great, although I had an extra weeks' additional antibiotics to go due to an infection in a healing broken leg between cycle 3 and 4. However I am now feeling much slower,things are becoming a bit of an effort,I'm having difficulty sleeping (I found that I got a decent nights…[Read more]

]]> 5e93561736b4138bd508aaf293929690 CarolZollo replied to the topic Info on SCT preparation in the forum General http://www.myeloma.org.uk/forums/topic/info-on-sct-preparation#post-92150 Fri, 10 Feb 2012 21:43:44 +0000 Hi,
Many thanks for your replies Helen and Tom. I'm actually feeling quiet good at the moment, but in a funny way miss the Thalidomide from the CTD as it helped me sleep! In an odd way I'm looking forward to getting on with the rest of the treatment, but not the potential dangers that go with it. It's also good to be forewarned that it can take a…[Read more]

]]> 7fe6b24c0497cca87bf55e732c2d0858 CarolZollo started the topic Info on SCT preparation. in the forum General http://www.myeloma.org.uk/forums/topic/info-on-sct-preparation Wed, 08 Feb 2012 23:09:28 +0000 Hi everyone,
Possibly a silly question, but as I am about to start the build up to stem cell capture starting on Feb 24th, and then will be having a gap between the collection and transplant, I was wondering what you did in the intervening weeks. The reason for asking is that as I have finished my initial CTD treatment,and am now coming out of…[Read more]

]]> c5561b80b9ce505841c6f8cf093d91f0 CarolZollo replied to the topic Travel insurance in the forum General http://www.myeloma.org.uk/forums/topic/travel-insurance1327064755/page/2/#post-92081 Wed, 08 Feb 2012 22:55:03 +0000 Hi everyone
Just to let you know that I have used World First for the last 2 years.They have given me an annual multi trip insurance ,but they do not insure for USA,Canada,and the Caribbean, and have been very reasonable with a declared myeloma,and a broken leg added on in the summer. At present we have put a hold on the policy as I am awaiting…[Read more]

]]> 09e7fc897119392c3f9eef5c706e0d64 CarolZollo replied to the topic another newcomer! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/another-newcomer/page/2/#post-85189 Tue, 24 Jan 2012 22:50:13 +0000 Hi everyone
I ' ve been quiet until tonight! Christmas was lovely but hectic with all my lovely kids, their husbands, children etc– 4 boys under 4 and a half, but great and very noisey! .However Christmas day was a 'dump day' so a real effort, luckily they all cooked, and the food looked lovely but my right knee/ leg which I broke earlier in…[Read more]

]]> 9434181a3fa4eeee9df96a62834ed651 CarolZollo replied to the topic WORST DAY YET in the forum Newcomers http://www.myeloma.org.uk/forums/topic/worst-day-yet/page/2/#post-85464 Tue, 24 Jan 2012 22:19:52 +0000 Hi Nicola,
I'm the other Carol (I think there are 2 of us), and I echo the other comments about the poo problems with your Dad, Micky -not nice for either party involved ( I say that as a patient and as a nurse) and I hope they are all resolved now.
On the fund raising side, my eldest son,Michael Jr ( cos his dad is Michael as well) decided off…[Read more]

]]> 91c51d939f78d155eb05116c6d48fc32 CarolZollo replied to the topic New kid on the block! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-kid-on-the-block#post-85364 Tue, 24 Jan 2012 21:53:55 +0000 Hi bikerchris,
I have been quiet for a while, but welcome you to this very supportive and exclusive band of people who dance with MM. This is not a text book disease and affects different people in different ways. The enormity of your diagnosis also cannot be taken in in one sitting- and can be very frightening if information is collated from…[Read more]

]]> e6750b34364f6d3e9741c267309ac40b CarolZollo replied to the topic another newcomer! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/another-newcomer/page/2/#post-85183 Wed, 30 Nov 2011 23:57:50 +0000 Hey guys
I've had some good news today-my consultant so pleased he sent me the results. My Kappa free-light chains have dropped from 190 to 12 with just one cycle of CTD , lower than they have been for 18 months or more. I've always been just above the normal level of 3-19 and they started shooting up st the time that I broke my leg 6 months…[Read more]

]]> 267574aa01170c7abb01a4989810c25a CarolZollo replied to the topic another newcomer! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/another-newcomer/page/2/#post-85180 Mon, 28 Nov 2011 01:16:22 +0000 It's been a few weeks since I have posted on here.The days seem to run into one another! I am on week 5 now with the Thalidomide dose doubled when I saw my Consultant. Having said it was OK two weeks ago, I'm now finding that my body responses to the steroid 'dump day's are becoming more challenging and lasting longer, possibly as a result of…[Read more]

]]> 63a7289336482bf8ea16e3877e534f4c CarolZollo replied to the topic another newcomer! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/another-newcomer/page/2/#post-85177 Thu, 10 Nov 2011 21:50:51 +0000 A catch up. I'm now into my third week of CTD and finding it ok- have kept a detailed diary of my daily responses to tablets so can work out highs and lows and plan days I.e. Window cleaning and sorting out stuff on steroid days, and plonked in front of pre-recorded television on steroid dump days. The only blip so far has been a cough that took a…[Read more]

]]> 91675bba16d5bfc2b5942d16c3798e09 CarolZollo replied to the topic another newcomer! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/another-newcomer#post-85173 Sat, 29 Oct 2011 23:35:30 +0100 I've just realised what SCT is – and yes that is planned after 4 cycles of CTD ( it's surprising how quickly the acronyms creep in! ) and providing that I have a good response. Sounds as thought that is when all the hardwork starts -so a long way to go!

HAKA means challenge! This is what myeloma is !!
Caro

]]> 520f729b2c7d20cfdf8e3bfab3ca59aa CarolZollo replied to the topic another newcomer! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/another-newcomer#post-85172 Sat, 29 Oct 2011 23:27:13 +0100 Hi Helen,
We're not from NZ, just had a daughter who fell in love with the country and met her husband there!
Carol

]]> 1db03e208cbf3c59e689ed0a090fb325 CarolZollo replied to the topic another newcomer! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/another-newcomer#post-85171 Sat, 29 Oct 2011 23:04:51 +0100 Hi Eve
We are lucky to have a daughter in Hamilton and it was a special occasion (always to NZ).I hope you get to Mapua as planned.
Sorry haven't replied earlier but have just started my CTD and coming to terms with the numbers of lyctic lesions in my spine/ head. Thanks for all your helpful advice. I have cards and emergency numbers…[Read more]

]]> 0ac4a7933b5515e11f237e9f9ec9fc56 CarolZollo replied to the topic another newcomer! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/another-newcomer#post-85166 Tue, 18 Oct 2011 13:24:06 +0100 Thanks for all the lovely replies. We're not sure of the progression-whether the breaking my leg caused my free light chains to double or vica versa. I was told that with my initial diagnosis of the plasmacytoms at T4 that I had probably had it for 2 years before it had started causing symptoms-I was threatened with the scaffolding but luckily…[Read more]

]]> 5b1b47600d610a0fe2ca7fcd87abe23d CarolZollo started the topic another newcomer!. in the forum Newcomers http://www.myeloma.org.uk/forums/topic/another-newcomer Mon, 17 Oct 2011 17:03:27 +0100 Hi everyone-again like most I'm new to this and out of my comfort zone. I have been living with the underlying myeloma for 2 years since being diagnosed with a single plasmacytoma in my spine treated with radiotherapy and steroids.I have been monitored by a superb consultant at Torbay who knows me and my body response pretty well by now.My family…[Read more]

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