Myeloma Forum | AmelieLund | Activity https://forum.myeloma.org.uk/members/Amelie/activity/ Activity feed for AmelieLund. Sat, 11 Apr 2026 12:16:26 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 db4734678e005638006564133325df48 AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct/page/4/#post-93214 Sun, 09 Dec 2012 03:00:22 +0000 Just wanted to let everyone know that John is doing well after his 2nd sct which took place in August. It was much easier than first time and he feels better now than after the first since he has no skin troubles like last time. He is working full time. Hope this can bring some hope to those of you who are facing the 2nd sct.
Love Amelie

]]> 7e3e73e7615317eb169ef8c6dd4e5fcd AmelieLund replied to the topic Kyprolis... in the forum General http://www.myeloma.org.uk/forums/topic/kyprolis#post-93235 Wed, 25 Jul 2012 00:23:54 +0100 Thank you very much Terry – it is useful information indeed.
I wonder how the patients from abroad financed the treatment?

In Scandinavia we have a public health insurance, which is a good thing, but I don't think it is easy to make them pay for treatment abroad. 🙁

Cheers,
Amelie

]]> 0a5b0ae269215da00831583f2fcb1b7b AmelieLund replied to the topic Kyprolis... in the forum General http://www.myeloma.org.uk/forums/topic/kyprolis#post-93233 Tue, 24 Jul 2012 23:46:55 +0100 Hi Dai,

That seems very interesting! Are you thinking of the Mayo Clinic? I heard they are rather restrictive with too much treatment.

How can it be that USA is so much further than the EU? Is it possible for a EU citizen to have treatment in the USA?

Best wishes,
Amelie

]]> 097e59b4443444210af9ce56638779ec AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct/page/4/#post-93213 Tue, 24 Jul 2012 23:41:55 +0100 Hi everyone!

The day before yesterday I called Celgene, and yesterday the director called me on his cell phone from his holiday to answer my questions! Impressive service, I must say! 🙂

The reason why they have withdrawn the application for approval of Revlimid for maintenance and 1st line treatment is following. The trials with Revlimid…[Read more]

]]> 39ce8de5b48a58e9e462c40ddd9f3817 AmelieLund replied to the topic Kyprolis... in the forum General http://www.myeloma.org.uk/forums/topic/kyprolis#post-93231 Sun, 22 Jul 2012 22:22:23 +0100 I also read news from myelomabeacon – it is well done and easy to understand. They do also have a community – but not as good as this one 😀

]]> dec30f9b0b1637f879a4c30d99da1d06 AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct/page/3/#post-93203 Sat, 21 Jul 2012 23:37:56 +0100 Hi Eva,

Thank you very much for sharing your experiences, it is very useful for us!

Did I understand you correctly, you don't take Thalidomide following a sct?

I will pass the info to John so he can ask his doctor.

Best luck to you too!
Amelie

]]> 70c0b4eb8eb84e96cb1c3b7e0c94d7ba AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct/page/3/#post-93201 Sat, 21 Jul 2012 23:03:01 +0100 Thank you Dai! It was very informative!

I know that Revlimid has been in use for relapsed patients for a while in Europe, but it was on January 4th 2011 Celgene sent the press release that they had applied for using Revlimed as maintenance and 1st line treatment. At that time I had already been reading on the myelomabeacon about the risk of…[Read more]

]]> 8b475130af3900beba0c9ddbb84763ec AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct/page/3/#post-93198 Fri, 20 Jul 2012 21:03:32 +0100 Thank you Vicki!
All the same good wishes to you and Colin!

]]> 4fa81f6a768c163f962e96820583acac AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct/page/3/#post-93195 Fri, 20 Jul 2012 14:42:16 +0100 Hi Eve,

I have tried to call Celgene today, but didn't get through. I will try again next week and keep you informed!

It seems strange to withdraw the application because of the increased risk from 2 to 7%. And already when they submitted the application everyone knew of that increase, so it cannont be the explanation – or not the full…[Read more]

]]> 4f527ac27c3de8ded27a0b5b17089212 AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct/page/3/#post-93196 Fri, 20 Jul 2012 10:42:14 +0100 Hi Dai,

It is just because I think the two years which have passed since his 1st sct went very quickly. 🙁
He got Velcade prior to his 1st sct, so I am afraid that is not an option again. I think they might give him Revlimid as one of the last drugs – however I would have prefered that he had it as maintenance.
What other drugs are…[Read more]

]]> 020f830a1981dc17ed217aa405ef63d4 AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct/page/2/#post-93192 Fri, 20 Jul 2012 01:03:25 +0100 Thanks everyone for interesting and thoughtful replies!

I am of course quite nervous about the doctor's message to John on August 14th. If he is offered maintenance it will most likely be with thalidomide. Did anyone try that as maintenance?

Also I can't stop thinking about the future, since I have heard from several people that the…[Read more]

]]> 9653c1372cf212abb6259c72d641943e AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct/page/2/#post-93186 Thu, 19 Jul 2012 12:18:51 +0100 Hi Keith,

I totally agree with you and it seems that your doctor is a reasonable man!
If it is after your second relapse, I presume it is not give as a maintenance of a sct?

Best of health to you too!
Amelie

]]> 75ee1a76b84c940315e1612062017a40 AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct/page/2/#post-93184 Thu, 19 Jul 2012 12:05:03 +0100 Dear Helen and Eve,

Thanks for your replies – it is a very important discussion.
John was never offered any trials. I gave him some articles on Revlimid maintenance which he showed to the doctor but he just replied that "new American research says that Revlimid is not good". No further explanation and no choice.

If I was the patient and I…[Read more]

]]> be2fc625cbdc0192ef558f97c18d8d7d AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct/page/2/#post-93181 Thu, 19 Jul 2012 11:55:11 +0100 Thank you Carol!
I hope your 1st sct will rest very long!
Love
Amelie

]]> 3bd11ca23952c21c680ca926803e8f9c AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct#post-93179 Wed, 18 Jul 2012 15:07:30 +0100 Hi Liz,

I wish Kev an easy second sct and quick recovery. All the best wishes to both of you.

Love
Amelie

]]> 390b0817692ad4cb38f157790a1e8eab AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct#post-93173 Wed, 18 Jul 2012 14:56:39 +0100 Hi Eve!

We actually don't have much snow – your husband would be disappointed! We have mostly wind and rain 🙁 However this year, I am happy for the miserable summer – I guess it would be much worse for John if it was very hot.

John also received Velcade as first line treatment prior to his first sct. Prior to the second he got thalidomide.…[Read more]

]]> 21c237d8c02ccd1484459f86bbf053a8 AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct#post-93177 Wed, 18 Jul 2012 14:37:37 +0100 Thank you David! All the best luck to you too!
Love
Amelie

]]> 7fef3d7cc23c44d11e466875e49d9d9b AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct#post-93174 Wed, 18 Jul 2012 14:35:02 +0100 Thank you Tom!
All the same good wishes to you,
Love
Amelie

]]> 0a290b020f07f75a8e49e64ddf76fb52 AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct#post-93175 Wed, 18 Jul 2012 14:33:31 +0100 Thank you very much! He plans to be back working ultimo september, so I hope he will manage that!

]]> 8feb36801d346ed4b256eb888c836e6e AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct#post-93169 Tue, 17 Jul 2012 14:12:08 +0100 Hi Eve,

The doctor has mentioned some maintenance treatment, but it isn't decided yet. Apparently it will be with thalidomide – if it will be. His doctor seems to be very much against Revlimid. I don't know why, but Celgene has withdrawn its application for Revlimid in EU, so maybe that is the reason. Although the only "bad" thing I could find…[Read more]

]]> 302ec1106719948e46603a1a002be881 AmelieLund replied to the topic John's 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct#post-93167 Mon, 16 Jul 2012 22:12:55 +0100 John was lucky with his first stem cell harvest so they had enough for the second sct and they didn't have to harvest again.

All the best luck to Stephen, hope he will have the same experience as John. According to the nurses it isn't unusual that 2nd time is easier.

Love
Amelie

]]> 5dc73ff935395f9d9b08139443821ac8 AmelieLund started the topic John's 2nd sct. in the forum General http://www.myeloma.org.uk/forums/topic/johns-2nd-sct Mon, 16 Jul 2012 21:11:38 +0100 John just had his 2nd sct and he will be discharged either tomorrow or the day after.

According to himself it was much easier than first time. Just wanted to share, if anyone else is facing the 2nd round.

🙂

]]> e3a58cb2044071fe54e468e75dd20aba AmelieLund replied to the topic Good News X Two in the forum General http://www.myeloma.org.uk/forums/topic/good-news-x-two/page/3/#post-93008 Mon, 16 Jul 2012 21:07:36 +0100 Great news for both of you, I am so happy for you!

]]> 2bba8f7c4062980c4953f1f5b661245e AmelieLund replied to the topic Brocho - Bridget Rochfort in the forum General http://www.myeloma.org.uk/forums/topic/brocho-bridget-rochfort/page/3/#post-92913 Tue, 03 Jul 2012 00:05:47 +0100 I am so terribly sorry to hear this.
Your mom made a great difference to us here in this forum.
All the best wishes to you.

]]> 4309655937d2fe34409d46bb950446c3 AmelieLund replied to the topic John is due for his 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/john-is-due-for-his-2nd-sct#post-92311 Sat, 10 Mar 2012 23:03:11 +0000 Hi Debs,

I don't know if they are available here, but I will check it out – if not there will for sure be something similar. Can the patient bring his own ice and can all kinds of ice be used? Maybe even vanilla ice? Or should it be water based?

I really hope to find an alternative, because after last time he couldn't even watch someone…[Read more]

]]> 53cee36a21641e5336dbaa3b962110fc AmelieLund replied to the topic John is due for his 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/john-is-due-for-his-2nd-sct/page/2/#post-92316 Fri, 09 Mar 2012 18:26:16 +0000 Hi Mavis,

Thanks for your good wishes, it means a lot!
Definitely John is in a much better condition before this sct than before the first when he had gone through the surgery in his back due to the loss of 2 vertebraes.

The 2 years which have passed have been absolutely wonderful. We have enjoyed every second, been laughing a lot and had…[Read more]

]]> 88ce17f5d8137a9bbadc21ccc7262ed1 AmelieLund replied to the topic John is due for his 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/john-is-due-for-his-2nd-sct/page/2/#post-92314 Fri, 09 Mar 2012 18:21:00 +0000 Hi Dai,

Good to hear thalidomide wasn't that bad… Of course my impression is influenced by the reports from the 60's and 70's.
We are planning another concert together and I am wondering if it is possible to conduct while being on thalidomide and corticosteroid, but I hope so!

John's stem cells were collected in only 4 hours so apparently…[Read more]

]]> efbfc804ca353cd1df01899f228efd0a AmelieLund replied to the topic John is due for his 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/john-is-due-for-his-2nd-sct#post-92312 Thu, 08 Mar 2012 21:55:50 +0000 Thank you Keith and Dai for the replies.

I just wonder why they would collect for 3 sct if they would never give the 3rd one…

The doctor won't give him Velcade again since he got it as preparation to the first sct. This time it will be thalidomide, we are a bit nervous how it would be. Did any of you have thalidomide?

Thanks a lot for…[Read more]

]]> 59c2c43ba9eb194dc85519147101d453 AmelieLund replied to the topic John is due for his 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/john-is-due-for-his-2nd-sct#post-92308 Thu, 08 Mar 2012 01:10:47 +0000 Thanks a lot Keith, it is SO good to know that there IS a chance for a longer second remission. It means a lot to have a hope!

When they collected John's stem cells they got enough for 3 transplants. Has anyone heard of someone who got 3 transplants? I am just wondering because obviously I start to think about what they will do when he relapses…[Read more]

]]> d58dbe0307536c103a4f32e9f270bcfb AmelieLund replied to the topic John is due for his 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/john-is-due-for-his-2nd-sct#post-92306 Sat, 03 Mar 2012 19:07:05 +0000 Thanks a lot.

Does anyone have some good links to info on 2nd sct?

]]> 6e23321034c0178acd360b3ddf8a2730 AmelieLund replied to the topic John is due for his 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/john-is-due-for-his-2nd-sct#post-92304 Fri, 02 Mar 2012 21:05:28 +0000 What happened to this thread? Suddenly I couldn't see it in the Gerenal forum. :-0

]]> e9229bc15a4d29cd71e55918c0f9aa54 AmelieLund replied to the topic John is due for his 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/john-is-due-for-his-2nd-sct#post-92302 Fri, 02 Mar 2012 17:41:57 +0000 Thank you Tom, is there any chance for that? I thought 2nd sct would always last shorter than the first one 🙁
I know some people have absolutely no result of their sct, and compared to those we have been extremely lucky. The almost 2 years after the first sct has been absolutely wonderful. Just hoped for a bit more.
Thanks again,
Amelie

]]> 988c2d29b43fbb5099644a73038226f4 AmelieLund replied to the topic John is due for his 2nd sct in the forum General http://www.myeloma.org.uk/forums/topic/john-is-due-for-his-2nd-sct#post-92303 Fri, 02 Mar 2012 17:39:50 +0000 Thanks for your encouraging message – good to hear it can be easier 2nd time.

As far as I remember the cold "thing" I heard of wasn't eatable, I will try to surch.

The problem is that the doctor says very little, and John is certainly not good in asking questions, that is why we always know so little. 🙁

Love
Amelie

]]> 55fe6bb0b38617b145e2dbf40d888dd6 AmelieLund started the topic John is due for his 2nd sct. in the forum General http://www.myeloma.org.uk/forums/topic/john-is-due-for-his-2nd-sct Thu, 01 Mar 2012 20:14:12 +0000 John is having his 2nd sct in mid july. Only 23 months after the first. I am SO disappointed that it didn't last longer, I really expected that he would have several years since his life quality has been very good, he has been able to work full time and do everything he wanted.

Prior to the sct he will be treated with thalidomide. I am…[Read more]

]]> 88fc29b00a8003e1711128010a4cadba AmelieLund replied to the topic HERE WE GO AGAIN !! in the forum Treatment http://www.myeloma.org.uk/forums/topic/here-we-go-again-/page/2/#post-98769 Sat, 18 Feb 2012 15:10:14 +0000 I am so sorry – I send you all my best wishes and thoughts!
Love Amelie

]]> 576dd4e871ac5cd81f4500c218d4f461 AmelieLund replied to the topic Myeloma Blog! in the forum General http://www.myeloma.org.uk/forums/topic/myeloma-blog#post-92088 Tue, 24 Jan 2012 00:58:45 +0000 Hi Phoebe,
Just wanted to say that I am amazed about your initiative and good work. People like you make a difference. Your dad must be proud of you!
Love Amelie

]]> ad52dcd68b4618d94750c91b4f644072 AmelieLund replied to the topic Catching up in the forum General http://www.myeloma.org.uk/forums/topic/catching-up#post-92041 Thu, 19 Jan 2012 12:48:26 +0000 Thanks for your reply. I don't have myeloma, but my friend John has and he was not offerede Revlimid after his successful sct in August 2010. Now the myeloma seems to be back and I can't stop thinking that it might not have happened if he had got the Revlimid maintenance. On the other hand we wouldn't know if he had tolerated it.
Now we are…[Read more]

]]> 05423896fe57c950849d94688ffedcdd AmelieLund replied to the topic Catching up in the forum General http://www.myeloma.org.uk/forums/topic/catching-up#post-92042 Thu, 19 Jan 2012 12:43:46 +0000 Thanks for the reply – I will look for information on that trial.
All the best to you.

]]> e5cdf23ee8bc06d8c1d5acf795d64935 AmelieLund replied to the topic Catching up in the forum General http://www.myeloma.org.uk/forums/topic/catching-up#post-92032 Mon, 16 Jan 2012 23:21:33 +0000 Hi Carol,
Thanks for sharing your experiences with Revlimid. I am very interested in this since it is never given here (I am in Denmark).
Are you in the UK? And is Revlimid maintenance normally offered after a sct?

I know Revlimid is not well tolerated by everybody but it is still nice to have the possibility to try it.

I wish you all the…[Read more]

]]> a3bee0825eb85553e00ee8a73c7bd25b AmelieLund replied to the topic Is it back? in the forum General http://www.myeloma.org.uk/forums/topic/is-it-back#post-92014 Mon, 16 Jan 2012 09:31:08 +0000 Thank you Gill!
Did I understand you correct that Stephen has an ok pp, but bone damage anyways?
Thanks for the good wishes and same to you!

]]> 820e05c51d5af923f95d1eb4f9edef39 AmelieLund replied to the topic Is it back? in the forum General http://www.myeloma.org.uk/forums/topic/is-it-back#post-92012 Sun, 15 Jan 2012 14:04:44 +0000 Thanks a lot for your reply!
John had serious skin problems and he has been regularly to the dermatologist who checked for everything including AIDS (!), but they never saw any link to his MM which I find VERY strange since I have read numerous reports from mm patients telling about different skin problems.
However they finally gave him…[Read more]

]]> 468e70de19228360a262e396b734772f AmelieLund replied to the topic Is it back? in the forum General http://www.myeloma.org.uk/forums/topic/is-it-back#post-92010 Sat, 14 Jan 2012 01:15:59 +0000 Thanks for the explanation and your good wishes – we will pray for you as well.
Love
Amelie

]]> 80022abad98978d80b7d7e4762eb7208 AmelieLund replied to the topic Myeloma beacon info in the forum General http://www.myeloma.org.uk/forums/topic/myeloma-beacon-info#post-92018 Fri, 13 Jan 2012 00:56:09 +0000 Oh I hope I am not confusing things. Cardamom is a common spice which is used for cakes ore Indian food. From what I can google cardamonin comes from cardamom:
http://natural-field.en.alibaba.com/productshowimg/455860924-212284429/Manufacture_98_cardamonin_cardamom_extract_.html

]]> 61cf02a70cf72fba5d67b92f6b6b7191 AmelieLund replied to the topic Myeloma beacon info in the forum General http://www.myeloma.org.uk/forums/topic/myeloma-beacon-info#post-92016 Thu, 12 Jan 2012 23:46:12 +0000 OMG – that is funny! I have made a lot of cakes for John and we started joking that is was his medicine. If cardamom is effective it might be true! 😀
Thanks for posting!

]]> dc7caf807c0bf8be0ae4b6f6878c5d82 AmelieLund replied to the topic Is it back? in the forum General http://www.myeloma.org.uk/forums/topic/is-it-back#post-92008 Thu, 12 Jan 2012 22:44:48 +0000 Thanks Kay, that is nice to hear!
What exactly is HB?

I am looking very much forward to hear what the doctor said on Tuesday. It is going to be a tough couple of days though – on Monday my favorite aunt is having a heart surgery 🙁

]]> 0fbb0369cf5ad5f30e2fb4c8e3cf6346 AmelieLund replied to the topic Is it back? in the forum General http://www.myeloma.org.uk/forums/topic/is-it-back#post-92006 Wed, 11 Jan 2012 22:24:21 +0000 Thanks a lot for your replies.
His PP has been raising for more than 3 times, but everything else seems to be perfect, so the doctor didn't seem worried last time.

Today John was less concerned and said the pain could just be old age, just like you said Tom. The pain in his ribs isn't new, already when he was in the hospital he was told they…[Read more]

]]> 40a209d8177a435dbf9050f47465b16d AmelieLund started the topic Is it back?. in the forum General http://www.myeloma.org.uk/forums/topic/is-it-back Wed, 11 Jan 2012 00:23:51 +0000 John is now feeling pain in his ribs and hip.
He had a successfull sct in August 2010, pp kept dumping until half a year later when they were down to 1.3. Then they started raising again – now they are around 6.

He told me he thinks it is on it's way back 🙁 We will see what the doctor says on Tuesday. Right before Christmas he didn't mention…[Read more]

]]> 0de15e1b7f45b048442adf1965c7df33 AmelieLund replied to the topic Remission? What remission? in the forum Treatment http://www.myeloma.org.uk/forums/topic/remission-what-remission#post-98676 Wed, 11 Jan 2012 00:19:24 +0000 Just wanted to send you my most positive vibes!

]]> 309bee70208e662667b5a39a95fdb634 AmelieLund replied to the topic REMISSION. in the forum General http://www.myeloma.org.uk/forums/topic/remission/page/2/#post-91983 Tue, 10 Jan 2012 01:04:37 +0000 Great news, congrats!

]]> 3baffbc5c12dbe3b81f5b367d85fad1a AmelieLund replied to the topic Is this a disaster? in the forum General http://www.myeloma.org.uk/forums/topic/is-this-a-disaster/page/3/#post-90912 Sun, 04 Dec 2011 21:28:06 +0000 Thanks again to all of you for your very informative answers.

Somewhere else I read about someone who had bone damages with a paraprotein level of 3 and here I am reading about patients living well with very high levels. So it must mean that paraprotein alone says very little about the condition.

John had severe bone damage with a…[Read more]

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