Myeloma Forum | Paula Costin | Activity https://forum.myeloma.org.uk/members/paulapurple/activity/ Activity feed for Paula Costin. Sat, 11 Apr 2026 10:36:35 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 221d3bdc3a54353d411c816bf79c9323 paulapurple replied to the topic How can I help my Sister with Stem cell treatment & hair loss? in the forum Newcomers https://www.myeloma.org.uk/forums/topic/how-can-i-help-my-sister-with-stem-cell-treatment-hair-loss/#post-137685 Sat, 21 Apr 2018 10:24:05 +0100 Tell her not to panic. I have had 2 cycles of VTD, 3 of CTD and  DT PACE. I lost my hair after the DT PACE at the end of January. It’s growing again and is now about 1.5 cm long. I am to have stem cell harvesting (as Mick says above) on Monday followed by a stem cell transplant in May so my hair will come out again after they give me the high…[Read more]

]]> 91b8f459c92f1b2caa11d1e423a92f49 paulapurple replied to the topic Bewildered in the forum Newcomers https://www.myeloma.org.uk/forums/topic/bewildered/#post-137580 Wed, 04 Apr 2018 13:06:07 +0100 Glad I could be of help. Good luck my love.

Paula

]]> a78b1a4c269d47116a5b9f68dabdf2db paulapurple replied to the topic Bewildered in the forum Newcomers https://www.myeloma.org.uk/forums/topic/bewildered/#post-137556 Mon, 02 Apr 2018 13:10:08 +0100 They are right, Myeloma is rarely staged as it manifests differently in all of us. There is an international staging system but doctors don’t often use it. http://www.cancerresearchuk.org/about-cancer/myeloma/stages

I’m no expert but I don’t think her paraprotein level would be that high, it sounds to me that she may have Light Chain Myeloma.  I…[Read more]

]]> 2606929bdf8c760394272bb05c6f6ef1 paulapurple replied to the topic Hereditary in the forum Newcomers https://www.myeloma.org.uk/forums/topic/hereditary/#post-137528 Wed, 28 Mar 2018 12:32:15 +0100 The hereditary component is very slight I believe. The Myeloma Introductory booklet states:

..people who have a close relative (parent, sibling, child) with myeloma are up to twice as likely to get myeloma than the general population

The Myeloma Info pack states:

There is a slight tendency for myeloma to occur in families. Although rare, this…[Read more]

]]> 6bfccd755df84470b1ca96777635fb76 paulapurple replied to the topic Daratumumab in the forum Newcomers https://www.myeloma.org.uk/forums/topic/daratumumab-3/#post-137373 Sat, 10 Mar 2018 11:25:20 +0000 I’ve signed the petition Gerry and shared it on the UK Myeloma Support group Facebook page.

Paula

]]> e5bd3a2cc9a361506ae0e824b2ee33a3 paulapurple replied to the topic Daratumumab in the forum Newcomers https://www.myeloma.org.uk/forums/topic/daratumumab-3/#post-137367 Fri, 09 Mar 2018 13:42:06 +0000 Thanks Gerry.

]]> f99a2fde2e457c667c86a5252197f9e5 paulapurple replied to the topic Daratumumab in the forum Newcomers https://www.myeloma.org.uk/forums/topic/daratumumab-3/#post-137321 Tue, 06 Mar 2018 11:25:42 +0000 It does seem really tough doesn’t it. I have had three chemo treatments, all of which have failed to reduce my light chains significantly. Daratumumab is an option for me, but like you I could so easily have missed it. The only reason I didn’t start on another option is they were not sure what to try and have done some cytogenetics to inform…[Read more]

]]> c770a6d004c1744a642d1580b581304c paulapurple replied to the topic I need advice - Please help in the forum Newcomers https://www.myeloma.org.uk/forums/topic/i-need-advice-please-help/#post-137203 Wed, 21 Feb 2018 13:39:08 +0000 Perhaps ringing the Myeloma UK Information line would help.

Paula

]]> fc716399f491a45c356d86946fe5ab14 paulapurple replied to the topic My dad has been recently diagnosed with MM in the forum Newcomers https://www.myeloma.org.uk/forums/topic/my-dad-has-been-recently-diagnosed-with-mm/#post-137147 Sat, 17 Feb 2018 10:31:36 +0000 I can’t help you on this one I am afraid but you will reach more people who have loads of information and experience to share if you join the UK Myeloma Support Group Facebook page; it’s where I turn if I need information and support. It’s open to both people with Myeloma and their carers.

Good luck

Paula

]]> 6eeaa9a0893a3a027deabb8185ef3c83 paulapurple replied to the topic Recently Diagnosed Multiple Myeloma in the forum Newcomers https://www.myeloma.org.uk/forums/topic/recently-diagnosed-multiple-myeloma/#post-137113 Tue, 13 Feb 2018 13:20:28 +0000 I would ring the Myeloma UK help line. Myeloma is a very individual cancer and we are all affected differently.

Read the newly diagnosed booklet (link below) as this will help you understand more about the condition. Myeloma isn’t curable but it is…[Read more]

]]> 16d3dfa587e33682dec7e094f8290dcf paulapurple replied to the topic Father with multiple myeloma in the forum Newcomers https://www.myeloma.org.uk/forums/topic/father-with-multiple-myeloma/#post-137112 Tue, 13 Feb 2018 12:56:18 +0000 I didn’t get on well with my father either so I have some idea what you are going through. I would read your way around the great info on the Myeloma UK web site. The consultant may have started him on Initial treatment (read the info sheet on this). It depends what type of Myeloms he has as it’s so individual. I have light chain Myeloma so how…[Read more]

]]> 3ddc7bb088e5f3fbcd88824a7029aa5d paulapurple replied to the topic Bone Marrow Trephine in the forum Newcomers https://www.myeloma.org.uk/forums/topic/bone-marrow-trephine/#post-136932 Wed, 24 Jan 2018 15:45:10 +0000 I agree, it is bad not to have someone go through them with you. Do you have a consultant appointment soon? If not I would ring and ask for one.

Now I’m not exactly sure but I think that the 4% relates to abnormal plasma cells in your bone marrow, if so then this is quite low. I had 11%/12% when I was diagnosed. I think anything over 10% means…[Read more]

]]> d7716ece10812321b0357c377b9840c7 paulapurple replied to the topic Radiotherapy Questions in the forum Newcomers https://www.myeloma.org.uk/forums/topic/radiotherapy-questions/#post-136867 Fri, 19 Jan 2018 17:13:19 +0000 I had radiotherapy as, along with the Myeloma I also had Non Hodgkin’s Lymphoma which manifested as a tumour behind my right eye. You can’t feel the radiotherapy as it’s being done but you will hear a lot of noise from the machine. I had bursts in three different places so it moved around me and makes a noise when it moves. It’s not like an MRI…[Read more]

]]> e6f4c52212b91e9fa8d234d444cb14de paulapurple replied to the topic Neuropathy factsheet in the forum Newcomers https://www.myeloma.org.uk/forums/topic/neuropathy-factsheet/#post-136664 Sun, 14 Jan 2018 17:25:56 +0000 I had PN too with Velcade. VTD didn’t work for me so I only had three cycles but the PN has stayed with me. Rcently I have had DT PACE with large doses of Thalidomide, which has increased the PN. I mainly get it in my hands and feet. I find that being on my feet helps, rather than sitting. My hands bother me more as even typing can be difficult…[Read more]

]]> edccd533d8eeb32198a200adab8238d6 paulapurple replied to the topic Just Diagnosed in the forum Newcomers https://www.myeloma.org.uk/forums/topic/just-diagnosed-5/#post-136558 Tue, 02 Jan 2018 19:31:59 +0000 I personally don’t take it but I know some people do. It can be difficult to establish whether it’s the drugs that are working or the cannabis oil. Post a question on the Myeloma UK facebook page and there will be people that will give you links. Talk to the team as they may have views on it. I guess it’s a personal decision but whilst on…[Read more]

]]> fdde007b2509dbf549f0a439e5e3a0ee paulapurple replied to the topic Just Diagnosed in the forum Newcomers https://www.myeloma.org.uk/forums/topic/just-diagnosed-5/#post-136555 Tue, 02 Jan 2018 17:57:38 +0000 If he’s having back pain he will probably have an MRI, CT etc to see what’s happening in that area to inform the treatment plan, if he hasn’t had that already. Ask questions as Myeloma can affect the bones, especially the spine.

If he’s having Thalidomide, a steroid (dexamethesone) and an injection this is most likely Velcade. This treatment is…[Read more]

]]> 6b5377c0af21bd74be562bd596d50c50 paulapurple replied to the topic Just Diagnosed in the forum Newcomers https://www.myeloma.org.uk/forums/topic/just-diagnosed-5/#post-136551 Tue, 02 Jan 2018 15:51:18 +0000 My heart goes out to both him and you; he’s so young! This is supposed to hit people over retirement age, I was told I was young at 57, but it seems to be getting younger and younger.

I was diagnosed in January 2017 with Non Hodgkin’s Lymphoma, which was fortunately isolated to one tumor behind my right eye. A month later I was diagnosed with…[Read more]

]]> f8e96f1c833dce75bd94eeb950b14f3a paulapurple started the topic The Unexpected Christmas Present in the forum Treatment https://www.myeloma.org.uk/forums/topic/the-unexpected-christmas-present/ Sun, 24 Dec 2017 16:41:19 +0000 Latest blog post. For previous see mymyeloma.wordpress.com
Last week I saw my consultant and he confirmed that the current treatment I was on (CTD for those that know what this means) like VTD hadn’t succeeded in reducing my light chains so we are no further forward. The next step is to be DT PACE, a fairly aggressive regime for those of us that a…[Read more]

]]> db239b6d2ad5a431a0908d2e80d77c6d paulapurple started the topic The Unexpected Christmas Present in the forum Treatment https://www.myeloma.org.uk/forums/topic/the-unexpected-christmas-present/ Sun, 24 Dec 2017 16:41:19 +0000 <p class=”MsoNormal”><b>Latest blog post. For previous see mymyeloma.wordpress.com</b></p>
<p class=”MsoNormal”></p>
<p class=”MsoNormal”>Last week I saw my consultant and he confirmed that the current treatment I was on (CTD for those that know what this means) like VTD hadn’t succeeded in reducing my light chains so we are no further forward. T…[Read more]

]]> db374c92fc2fddf38e381bbb66683d8e paulapurple replied to the topic Hair Thinning in the forum Newcomers https://www.myeloma.org.uk/forums/topic/hair-thinning/#post-136361 Thu, 07 Dec 2017 13:05:24 +0000 DT-PACE is a treatment combination used to treat myeloma patients who have received several previous treatments or who are refractory to treatment. DT-PACE is a combination of six drugs: Dexamethasone, Thalidomide, and four   Chemo drugs:  Cisplatin, Adriamycin® (doxorubicin), Cyclophosphamide and Etoposide.

Its given continuously over a 4-d…[Read more]

]]> d9d08fe639b3d6a960f0e9cccce61c86 paulapurple replied to the topic Hair Thinning in the forum Newcomers https://www.myeloma.org.uk/forums/topic/hair-thinning/#post-136315 Sun, 03 Dec 2017 15:37:34 +0000 My son is a hairdresser. He says that he wouldn’t colour hair for at least 6 months afterwards because your hair is much more fragile than normal and has gone through trauma. He said if you must then use vegetable dyes not chemical ones.

My hair hasn’t thinned on either of the Chemo I’ve had (Velcade and Cyclophosphamide) but neither drug has…[Read more]

]]> 14e1654eac7eb1c6edacc515a5fe0c53 paulapurple started the topic Confidence in the forum General https://www.myeloma.org.uk/forums/topic/confidence/ Mon, 20 Nov 2017 12:01:27 +0000 My latest blog post on confidence

mymyeloma.wordpress.com

 

]]> f47c0531339fc7f74be2a68f102bbe95 paulapurple replied to the topic Newly diagnosed and not given info in the forum Newcomers https://www.myeloma.org.uk/forums/topic/newly-diagnosed-and-not-given-info/#post-136007 Sat, 18 Nov 2017 10:15:58 +0000 I know exactly how you feel; it does take over your life. My consultant rang me last week with the news that the Cyclophosphamide isn’t working either and my free light chains have gone back up again!  Another bone marrow biopsy on Tuesday and then they will decide what happens next!  I expect it will be a lot more aggressive this time so I’m n…[Read more]

]]> 9283d3466bf3227ec880fd51f5b9813d paulapurple replied to the topic Another joins the group in the forum Newcomers https://www.myeloma.org.uk/forums/topic/another-joins-the-group/#post-135892 Sat, 11 Nov 2017 13:43:53 +0000 I expect that they will want to do a Bone Marrow Biopsy either when you go in on 22nd or very soon afterwards; in my hospital I saw the consultant in the morning and they did the biopsy in the afternoon. The biopsy will give them a clearer picture of exactly what’s going on. They may also do PET scans, MRI or X rays to see what’s going on bone…[Read more]

]]> a40b350dbabf7269ab00b6757215fd9f paulapurple replied to the topic Back Wedge Fractures in the forum Newcomers https://www.myeloma.org.uk/forums/topic/back-wedge-fractures/#post-135277 Sun, 01 Oct 2017 15:35:03 +0100 I can’t help you I’m afraid but have you tried posting on the UK Myeloma Support group Facebook page? There are some very knowledgeable people on there and you will get some swift answers I am sure.

]]> da0eac7a9bf4aeb82d17573365592131 paulapurple replied to the topic Newly diagnosed and not given info in the forum Newcomers https://www.myeloma.org.uk/forums/topic/newly-diagnosed-and-not-given-info/#post-135276 Sun, 01 Oct 2017 15:32:01 +0100 Look on the Myeloma UK website for the info on Stem Cell transplant; it will clearly set out what’s involved. If you haven’t read the booklet for new diagnosed people on the site either then I can recommend this as it will fill you in with all the science! I found it much easier to understand too when I was in possession of all the facts. You will…[Read more]

]]> 77951b1eb847f26c5553c5a6eaaef48a paulapurple replied to the topic Treatment consultation for my mum in the forum Newcomers https://www.myeloma.org.uk/forums/topic/treatment-consultation-for-my-mum/#post-134611 Sun, 13 Aug 2017 11:36:30 +0100 I’m like your husband. I started on Velcade which didn’t work, then they added in the Thalidomide which has sent my peripheral neuropathy through the roof, plus it doesn’t seem to have made any difference. My consultant is worried about the neuropathy and lack of response so I think he’s going to change the drugs again next week. The aim is to get…[Read more]

]]> d98ea6f62b1fac1f2e57f372685d233a paulapurple replied to the topic Treatment consultation for my mum in the forum Newcomers https://www.myeloma.org.uk/forums/topic/treatment-consultation-for-my-mum/#post-134602 Sat, 12 Aug 2017 10:19:01 +0100 I really feel for you when you aren’t able to be there all the time. I am lucky in that one of my daughters lives nearby and is very supportive. My husband doesn’t deal with it well as underneath it all I think he doesn’t want to face what this thing really is, especially as at the moment I am not responding to treatment. Perhaps men find it…[Read more]

]]> ec8b9a90a842b8fbad04cc00a1ab01ed paulapurple replied to the topic Treatment consultation for my mum in the forum Newcomers https://www.myeloma.org.uk/forums/topic/treatment-consultation-for-my-mum/#post-134536 Tue, 08 Aug 2017 11:18:44 +0100 I’d have a look at the information section on the Myeloma UK site https://www.myeloma.org.uk/information/

which should help you to compile a list of questions. I would want to know what type of Myeloma she has and whether she has any bone lesions (MRI should show this). Next big question is the treatment plan. I assume she also had a bone marrow…[Read more]

]]> 7c40f74cc98030bcb0689e34782f6ff4 paulapurple replied to the topic Hi I am from the country so I don't know any one with this illness my problem in the forum Newcomers https://www.myeloma.org.uk/forums/topic/hi-i-am-from-the-country-so-i-dont-know-any-one-with-this-illness-my-problem/#post-134535 Tue, 08 Aug 2017 11:12:16 +0100 It can be a lengthy process until they decide what treatment is appropriate then it does pick up speed and also you get used to the time table. I sometimes find it frustrating if something goes wrong that I still have to wait for the appointment with the consultant before anything changes. However when my first lot of treatment wasn’t working they…[Read more]

]]> fad7a89bb5fa855ad99c1b8c7ff7ee90 paulapurple replied to the topic Help! Not sure what it all means... in the forum Newcomers https://www.myeloma.org.uk/forums/topic/help-not-sure-what-it-all-means/#post-134452 Mon, 31 Jul 2017 13:42:52 +0100 Your biopsy will tell you for sure where you are at. Fingers crossed it isn’t. xx

]]> 63887d6c8ea7d495f6985cf12ace36f4 paulapurple replied to the topic I'm still standing! Celebrate the little things in the forum General https://www.myeloma.org.uk/forums/topic/im-still-standing-celebrate-the-little-things/#post-134431 Fri, 28 Jul 2017 10:39:36 +0100 Thank you for your lovely comments Avril, I really appreciate that. I have always been a glass half full type of person! I have had a really good response to my blog and I enjoy writing it; it’s the academic in me that misses the writing.

I will be having a stem cell transplant hopefully in the New Year and when my hair grows back I hope it…[Read more]

]]> bde1b9c0c7510d16472a556334f1f704 paulapurple replied to the topic Help! Not sure what it all means... in the forum Newcomers https://www.myeloma.org.uk/forums/topic/help-not-sure-what-it-all-means/#post-134398 Wed, 26 Jul 2017 18:12:15 +0100 I’m afraid I can’t really help you. Ring the Myeloma UK info line or post on the UK Myeloma Support Group Facebook page and I’m sure you will get a much better response.

]]> 91067ace15e720d6bdd0aba7bcecb532 paulapurple started the topic I'm still standing! Celebrate the little things in the forum General https://www.myeloma.org.uk/forums/topic/im-still-standing-celebrate-the-little-things/ Tue, 25 Jul 2017 09:56:34 +0100 My blog this week is about appreciating and celebrating the little things in life. My treatment wasn’t working and it is easy to get depressed about it until a friend reminded me that I was still standing!

Here’s the link if you want to read more

mymyeloma.wordpress.com

 

 

]]> 4dbc3d3d93126db8a40d4f6ac43f8097 paulapurple replied to the topic New member in the forum Newcomers https://www.myeloma.org.uk/forums/topic/new-member-4/#post-134357 Tue, 25 Jul 2017 09:50:04 +0100 Welcome Pauline. Myeloma is a complicated condition that certainly takes a while to get your head around. Hopefully between us we can help you find your way through the maze that is Myeloma! I know I found the Myeloma UK website really useful for all the information booklets it contains that you can download.

I find writing a blog really helps me…[Read more]

]]> 21a7a4df8375078252055fdf98d5fe6f paulapurple started the topic Being job less in the forum General https://www.myeloma.org.uk/forums/topic/being-job-less/ Sat, 15 Jul 2017 17:56:59 +0100 I write a blog. This week I have looked at the effect of being job less and last week’s contribution was about hair loss. Have a look. I’d love to hear your views.

https://mymyeloma.wordpress.com/

 

]]> 0050dd177b6a3e9d2f2b16fb00282d4e paulapurple replied to the topic Mum Diagnosed today. in the forum Newcomers https://www.myeloma.org.uk/forums/topic/mum-diagnosed-today/#post-134214 Thu, 13 Jul 2017 09:20:42 +0100 Sorry you are having a rough time of it. MM will often cause raised calcium levels of calcium in the blood. It can occur as a result of bone disease in which calcium is released into the blood stream when the affected bone is broken down.

You may find the newly diagnosed pack from Myeloma Uk really useful to explain things, I did. You can down…[Read more]

]]> eb0d40e3dee5b80a4c896a07e0c77945 paulapurple became a registered member https://forum.myeloma.org.uk/activity/p/50188/ Fri, 23 Jun 2017 01:40:31 +0100 0