Myeloma Forum | Dusk | Activity https://forum.myeloma.org.uk/members/dusk/activity/ Activity feed for Dusk. Wed, 15 Apr 2026 02:13:08 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 23921841143dc5489f6ed7cbe9f40521 Dusk replied to the topic Just a little update on my progress. in the forum General http://www.myeloma.org.uk/forums/topic/just-a-little-update-on-my-progress/#post-124980 Thu, 12 Nov 2015 14:25:18 +0000 Good Andy to hear that the progress to recovery has been so positive. My memory of having pneumonia last year still remains so I know how tough it can be, even without being in ICU.

Do you know what might have triggered it for you? In my case lung infections are easily triggered by the drug regimes affecting cell counts and being in contact with…[Read more]

]]> a0e683ecdd88bbacd396ab712bcad18e Dusk replied to the topic Has anyone else's life been lost through having a SCT? in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/has-anyone-elses-life-been-lost-through-having-a-sct/#post-124979 Thu, 12 Nov 2015 13:31:21 +0000 Dear Laura and Jacquie I too am sorry for your loss.

Karen, The Myeloma Beacon US site may be worth looking as the US has a very higher numbers with myeloma and there is a lot more debate by patients on it regarding whether to have an SCT.

When one has co-morbidities (and I am one who has) the risks are higher. Your doctor has advised you of…[Read more]

]]> 9c29eb01cfa78498d1b1f9dbd3ae0938 Dusk replied to the topic Letter to the Times - Blood Cancer plea in the forum General http://www.myeloma.org.uk/forums/topic/letter-to-the-times-blood-cancer-plea/#post-124862 Thu, 05 Nov 2015 15:57:49 +0000 There are private parts to the NHS system. The elite with resources, those who have medical insurance e.g. from the workplace or from their own funding who have myeloma will still have access to the drugs NHS patients will be denied.

From the drug companies perspective the UK alone does not have enough myeloma patients for them to generate huge…[Read more]

]]> 7ba81dcf5d4ed8f9de2033e6a8a54196 Dusk replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/4/#post-124146 Tue, 15 Sep 2015 07:52:00 +0100 Jeffrey and Alex,

We and all patients denied treatments that are available have every right to be upset, angry, depressed according to their psychological makeup. I too have written to my Labour MP, a young inexperienced thing who took over from a well known high profile self promoting one. The latter wanted my vote but failed to do anything when…[Read more]

]]> 90267bd2141da5aa2111009769c6eeee Dusk replied to the topic To Transplant or not to Transplant? That is the question? in the forum Under 50s http://www.myeloma.org.uk/forums/topic/to-transplant-or-not-to-transplant-that-is-the-question/page/2/#post-124139 Mon, 14 Sep 2015 20:26:11 +0100 Hello Helen

When you are first diagnosed then the BMB serves a number of functions including taking a sample for cytogenetic testing as well as assessing the percentage of abnormal plasma cells in the bone marrow. It is a snapshot of the area where the sample was taken.

The myeloma is not always evenly distributed throughout the skeletal…[Read more]

]]> 5bf3a78d7079e76eb7c6a0a7ebc769d0 Dusk replied to the topic To Transplant or not to Transplant? That is the question? in the forum Under 50s http://www.myeloma.org.uk/forums/topic/to-transplant-or-not-to-transplant-that-is-the-question/page/2/#post-124139 Mon, 14 Sep 2015 20:26:11 +0100 Hello Helen

When you are first diagnosed then the BMB serves a number of functions including taking a sample for cytogenetic testing as well as assessing the percentage of abnormal plasma cells in the bone marrow. It is a snapshot of the area where the sample was taken.

The myeloma is not always evenly distributed throughout the skeletal…[Read more]

]]> ce700d46cf9ef44d01a734a45341d43c Dusk replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/3/#post-124137 Mon, 14 Sep 2015 18:59:03 +0100 I agree with Jeffery that political slurs are unhelpful, reminds me of the debates in parliament!

I think M UK is correct in that the CDF is an anomaly. What is needed is a NHS policy at central level regarding funding for medical treatments which are ongoing and cost a lot of money.

One of the areas which really has been left unsatisfactory is…[Read more]

]]> 6cd4a45d7f6fbfb9826165f412044b88 Dusk replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/3/#post-124137 Mon, 14 Sep 2015 18:59:03 +0100 I agree with Jeffery that political slurs are unhelpful, reminds me of the debates in parliament!

I think M UK is correct in that the CDF is an anomaly. What is needed is a NHS policy at central level regarding funding for medical treatments which are ongoing and cost a lot of money.

One of the areas which really has been left unsatisfactory is…[Read more]

]]> 35d4367f1143a60cce7d6b040594136e Dusk replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/#post-123938 Sat, 05 Sep 2015 17:01:48 +0100 The UK is getting to be a small market for newer myeloma drugs e.g. compared to USA where myeloma patients are not only in higher numbers, but the insurance, for those who can afford it, gives their treating clinicians more opportunity to make a case for their patients individual treatment more readily.

The NHS is being told to make savings and…[Read more]

]]> bbd8a2c31e03a5b051fc92e9f5cfe502 Dusk replied to the topic Vigilance - temperature and feeling unwell in the forum Treatment http://www.myeloma.org.uk/forums/topic/vigilance-temperature-and-feeling-unwell/#post-123850 Wed, 02 Sep 2015 10:37:11 +0100 Andy, sorry to hear you have what we with MM fear. I had it last year and I had a long hospital stay, thank to medical ‘failures’.

Did you have the pneumonia vaccine?

At my treating hospital we are told to report / go to A&E if temperature rises above 38. So it seems one needs to monitor at frequent intervals if suddenly feeling unwell /…[Read more]

]]> 92beb6b3e9593ce31a710963699fe22c Dusk replied to the topic To Transplant or not to Transplant? That is the question? in the forum Under 50s http://www.myeloma.org.uk/forums/topic/to-transplant-or-not-to-transplant-that-is-the-question/#post-123825 Mon, 31 Aug 2015 12:46:15 +0100 Dear Charlie, I do not know what you have decided regarding SCT. But the research suggests younger people like you who have suitable induction followed by SCT survive longer. Very few choose not to have an SCT unless their health status suggests a higher risk than normal.

In general, it is known that remissions are longer after an SCT, but not…[Read more]

]]> ba5809f8f898558a8839be5106f50700 Dusk replied to the topic Low neutrophil counts on treatment in the forum Side-effects http://www.myeloma.org.uk/forums/topic/low-neutrophil-counts-on-treatment/#post-123760 Wed, 26 Aug 2015 08:53:26 +0100 Hello Andy

22 cycles of RCD!!! Your bone marrow would have got quite a battering. Interesting they kept the cyclophosphamide in a triplet combination for so long a period, but as they say each of us is individual and the treatments given will be based on our doctor’s experiences of treating our disease. No wonder POM is easy for you after all…[Read more]

]]> e06b278ac34fe1e90595bc70346d2c3c Dusk replied to the topic Colin in the forum General http://www.myeloma.org.uk/forums/topic/colin/#post-123575 Sat, 15 Aug 2015 10:07:26 +0100 Wishing you and the family have good support at this sad time.

Dusk

]]> f726f9d38a0b21a59961a8f8f63b66fd Dusk replied to the topic life after the transplant in the forum Under 50s http://www.myeloma.org.uk/forums/topic/life-after-the-transplant/page/2/#post-123508 Fri, 07 Aug 2015 17:50:19 +0100 Hello Rebecca

A good post, showing depth of understanding of life choices so we live life and not look back or forwards with regret. we make a decision to have a treatment and then need to accept the outcome without regret.

The issue, as someone who was from the start accepting of the diagnosis, but wanting detailed involvement in decisions…[Read more]

]]> 6318ec3adb7eeb44d219a6d80275f89c Dusk replied to the topic Low neutrophil counts on treatment in the forum Side-effects http://www.myeloma.org.uk/forums/topic/low-neutrophil-counts-on-treatment/#post-123493 Wed, 05 Aug 2015 12:53:33 +0100 Fiona:  I noted from your other positing the decisions about ‘life’ your husband has made with your permission.  Although MM might force a role reversal, being a house husband with more time to enjoy the moment I think is great.

My life / body has been changing since MM and as a result I am now on second line treatment. Neutrophils have got v…[Read more]

]]> 1fc1855ab9f7b5fb438195ac6e8e2e8f Dusk started the topic Low neutrophil counts on treatment in the forum Side-effects http://www.myeloma.org.uk/forums/topic/low-neutrophil-counts-on-treatment/ Tue, 04 Aug 2015 11:38:38 +0100 Some forum members have mentioned having ongoing low neutrophil counts whilst on drug treatment outside of the hospital setting e.g. with revlimid, raising the spectre of infections arising between testing of blood for cell counts.

Are there ways members are managing this to prevent the possibility of severe neutropenia and the risk of serious…[Read more]

]]> 4e9024ace263d5bbc531810097e4cc45 Dusk replied to the topic Sugar. Reducing Sugar could reduce PP level in the forum General http://www.myeloma.org.uk/forums/topic/sugar-reducing-sugar-could-reduce-pp-level/#post-122938 Sat, 04 Jul 2015 17:08:57 +0100 Hi Folks

Just to give you a perspective, things like dried fruits have a lot of concentrated sugar, more than fresh fruits. Any high starch /carbohydrate containing foods (e.g. bread / rice), not just the sweet things we consider with added sugar, are reduced down into sugars in the body. Only if you eat a high protein / fat diet with say steamed…[Read more]

]]> 6c669620f4d339694437f6a98a587102 Dusk replied to the topic Interesting article .... in the forum General http://www.myeloma.org.uk/forums/topic/interesting-article/#post-122916 Wed, 01 Jul 2015 20:05:15 +0100 Rebecca,

Interesting post.

The personal perspective of each one of us will be based on our mental and emotional ability to cope with change. Corporations etc. find change difficult because the ability to take a whole group of ‘diverse and agenda seeking’ others’ to ‘another place’ to function better is very hard unless leadership is very very…[Read more]

]]> d56a6e06e1214f151d14a611ff473d2c Dusk replied to the topic Bone pain in the forum Related conditions http://www.myeloma.org.uk/forums/topic/bone-pain-4/#post-122518 Fri, 05 Jun 2015 22:09:03 +0100 Hi Carol,

Very few people achieve complete remission with the most stringent tests, many do not even loose their M protein/ FLC completely, and I have noted at my treating hospital, (well known) it seems some people after SCT  do have some level of maintenance aimed at pushing the remaining levels to a complete remission or a lower stable…[Read more]

]]> fd6346fb4f70de103798a30bb3d0306f Dusk replied to the topic Bone pain in the forum Related conditions http://www.myeloma.org.uk/forums/topic/bone-pain-4/#post-122518 Fri, 05 Jun 2015 22:09:03 +0100 Hi Carol,

Very few people achieve complete remission with the most stringent tests, many do not even loose their M protein/ FLC completely, and I have noted at my treating hospital, (well known) it seems some people after SCT  do have some level of maintenance aimed at pushing the remaining levels to a complete remission or a lower stable…[Read more]

]]> 31f556ce0253c846f5363338140ae834 Dusk replied to the topic Bone pain in the forum Related conditions http://www.myeloma.org.uk/forums/topic/bone-pain-4/#post-122518 Fri, 05 Jun 2015 22:09:03 +0100 Hi Carol,

Very few people achieve complete remission with the most stringent tests, many do not even loose their M protein/ FLC completely, and I have noted at my treating hospital, (well known) it seems some people after SCT  do have some level of maintenance aimed at pushing the remaining levels to a complete remission or a lower stable…[Read more]

]]> 7cac6b7a7662fced180cd4aab49d4228 Dusk replied to the topic Bone pain in the forum Related conditions http://www.myeloma.org.uk/forums/topic/bone-pain-4/#post-122384 Wed, 03 Jun 2015 21:07:26 +0100 Hi Mavis

Like you I have lots of lytic lesions etc. and have at different periods of time had bone symptoms from disc fracture/collapse from the myeloma, most recently a new area of the spine has been giving serious pain so I cannot sleep. I do not wish to be drugged and have tolerated spinal pain all my life, so continue to try and ‘live…[Read more]

]]> c1d2ce934df163a258d36a9508fefc43 Dusk replied to the topic Bone pain in the forum Related conditions http://www.myeloma.org.uk/forums/topic/bone-pain-4/#post-122384 Wed, 03 Jun 2015 21:07:26 +0100 Hi Mavis

Like you I have lots of lytic lesions etc. and have at different periods of time had bone symptoms from disc fracture/collapse from the myeloma, most recently a new area of the spine has been giving serious pain so I cannot sleep. I do not wish to be drugged and have tolerated spinal pain all my life, so continue to try and ‘live…[Read more]

]]> 457267171695dd6c0a35bf2eb64bf339 Dusk replied to the topic Moving my mother in with us? in the forum Carers http://www.myeloma.org.uk/forums/topic/moving-my-mother-in-with-us/#post-121949 Mon, 27 Apr 2015 20:06:09 +0100 Social Services apply their own assessment and threshold for services. It helps if the GP and other health professionals involved with your mother’s care writes to social services referring her for help giving details of the care help she needs with having her illness. A means test is also applied, based on income and savings. Anyone can buy care…[Read more]

]]> 689dee76431c66d2c8604f0d49ec5997 Dusk replied to the topic Low Platelet Count in the forum Treatment http://www.myeloma.org.uk/forums/topic/low-platelet-count/#post-121897 Thu, 23 Apr 2015 17:55:45 +0100 DSX very good of you to post this at a difficult time for your family. Your SIL had a very difficult time overall. Do you know what her treatment consisted of?

You do not mention what her stage of disease was or her age. Sometimes these things also can play a part in how the body copes with what is an effectively aggressive treatment regime.…[Read more]

]]> 296bf2b7b87b100fb20ff88a0ff5a65c Dusk replied to the topic feel lost and helpless in the forum General http://www.myeloma.org.uk/forums/topic/feel-lost-and-helpless/#post-121852 Mon, 20 Apr 2015 20:55:58 +0100 Dear Janey

So sorry to hear about your dad and the problem of trying to work out what is happening when you are not being informed. Having Power of Attorney for Health and Welfare for your father in a time he is confused would have given you the right to get information on his behalf.

Some infections can cause confusion. Is he still on…[Read more]

]]> d1e8eb9a9665b470e54cb2c5d0e9c460 Dusk replied to the topic Zometa and ONJ in the forum Treatment http://www.myeloma.org.uk/forums/topic/zometa-and-onj/#post-121845 Sun, 19 Apr 2015 20:01:02 +0100 hlpb- just to add your mother’s age may mean osteoporosis could weaken bones from both natural age changes in addition to the steroids used in treating myeloma. So it is morey complex to think about risks for for individuals. Lesions alone are not the issue. I expect in your mother’s case it is a balancing act which way to go in the decision for…[Read more]

]]> f54220a313d20f5863e558d27167de1d Dusk replied to the topic Zometa and ONJ in the forum Treatment http://www.myeloma.org.uk/forums/topic/zometa-and-onj/#post-121845 Sun, 19 Apr 2015 20:01:02 +0100 hlpb- just to add your mother’s age may mean osteporosis could weaken bones from both natural age changes and the steroids used in treating myeloma will additionally weaken the bones by increasing osteporosis. So it is morey complex to think about risks for for individuals. Lesions alone are not the issue. I expect in your mother’s case it is a…[Read more]

]]> 43b51c939248c594a25dd975d86be3cb Dusk replied to the topic Zometa and ONJ in the forum Treatment http://www.myeloma.org.uk/forums/topic/zometa-and-onj/#post-121843 Sun, 19 Apr 2015 15:38:01 +0100 I think this is a complex issue when adults have a history of not robust dental health / oral hygeine and then have chemotherapy, as this is when research suggests risk of ONJ is greater. Extraction of one suspicious tooth before zometa does not mean another will not give problems later during treatment.

Also the risk in relation to fractures is…[Read more]

]]> 81c390335442ae62a8e890fa18f0dac3 Dusk replied to the topic Chemo and more. in the forum Treatment http://www.myeloma.org.uk/forums/topic/chemo-and-more/#post-121172 Sat, 07 Mar 2015 10:41:21 +0000 Dear Val

Sorry no one responded to you and that you are unhappy with the information / treatment from current consultant.

Have you asked questions of the consultant as to what he means by ‘body is quite resistent to chemo…’ I assum he is talking about paraprotein / free light chains not going down much, but you need to ask. How many chemo…[Read more]

]]> be52f520041c4da8f5a6f3ab60dc21f2 Dusk replied to the topic Chemo and more. in the forum Treatment http://www.myeloma.org.uk/forums/topic/chemo-and-more/#post-121172 Sat, 07 Mar 2015 10:41:21 +0000 Dear Val

Sorry no one responded and that you are unhappy with information / treatment from current consultant.

Have you aske questions of the consultant as to what he means by ‘body is quite resistent to chemo…’ I assum he is talking about paraprotein / free light chains not going down much, but you need to ask. How many chemo sessions were…[Read more]

]]> 82e7f3f5a76d4fd7b2a1c050ffa46077 Dusk replied to the topic Negative consultant and no encouragement in the forum Treatment http://www.myeloma.org.uk/forums/topic/negative-consultant-and-no-encouragement/#post-120969 Wed, 25 Feb 2015 10:27:34 +0000 Dear Vicki,

sorry your consultation was so negative. Where is Colin being treated? You could ask to be refrred elsewhere for second opinion. It is evident that not only is MM a very individual disease in terms of its behaviour, but there are no real ‘rules’ as to how to treat it, so it is guessswork, save the guidance from NICE, whch the NHS…[Read more]

]]> c12b0fca55c0cab19357ec9f46994f14 Dusk replied to the topic Can our profiles or posts give name of treating hospital @consultant? in the forum General http://www.myeloma.org.uk/forums/topic/can-our-profiles-or-posts-give-name-of-treating-hospital-consultant/#post-119511 Mon, 17 Nov 2014 08:04:55 +0000 Hi Dawn

I do not know how USA works, but here although one might be under a consultant they ususally in teaching hopitals operate as part of a larger team  and it is my experience that you do not always get to see the same person. Do you find you see the same doctor at follow up appointments or with treatment decisions? That is something that…[Read more]

]]> 34c505e9a6c3fed74576304c4ac0f59d Dusk replied to the topic Can our profiles or posts give name of treating hospital @consultant? in the forum General http://www.myeloma.org.uk/forums/topic/can-our-profiles-or-posts-give-name-of-treating-hospital-consultant/#post-119511 Mon, 17 Nov 2014 08:04:55 +0000 Hi Dawn

I do not know how USA works, but here although one might be under a consultant they ususally in teaching hopitals operate as part of a larger team team and it is my experience that you do not always get to see the same person. Do you find you see the same doctor at follow up appointments or with treatment decisions? That is something that…[Read more]

]]> 259d8ad9395947a95adac19bbabf0b23 Dusk replied to the topic Dexamethadone v Prednisalone in the forum General http://www.myeloma.org.uk/forums/topic/dexamethadone-v-prednisalone/#post-119390 Mon, 10 Nov 2014 09:39:56 +0000 Hi Annette

As I understand it is Revlimid (lenalidomide) that has been indicated to give rise to secondary cancers, not the Prednisolone itself.

Peter- You question is interesting. I have noted that people not ‘fit’ for SCT are often prescribed Melphalan / Prednisolone combinations, most are elderly people possibly. So normally prednisolone is…[Read more]

]]>