Myeloma Forum | Gala Connell | Activity https://forum.myeloma.org.uk/members/gala/activity/ Activity feed for Gala Connell. Sun, 05 Apr 2026 20:30:08 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 83f97a352a8bfc66943b8ef364b61db2 Gala Connell replied to the topic Hair loss and natural hair wigs any advice please? in the forum Newcomers https://www.myeloma.org.uk/forums/topic/hair-loss-and-natural-hair-wigs-any-advice-please/#post-137736 Fri, 27 Apr 2018 02:52:24 +0100 I have just spoken to my sister and she told me she regrets buying a natural hair wig. Like Rebecca says it is more difficult to take care of and some of my sister’s friends who have synthetic wigs look fab and natural in them. Modern synthetic wig can be really natural looking and easy to manage.

]]> 61cbb8b15a18ed4abde2a72b0165f53b Gala Connell replied to the topic Hair loss and natural hair wigs any advice please? in the forum Newcomers https://www.myeloma.org.uk/forums/topic/hair-loss-and-natural-hair-wigs-any-advice-please/#post-137732 Thu, 26 Apr 2018 11:59:14 +0100 Hi, I cannot advise on where to buy, as my sister with myeloma lives in another country. But I can say that her wig looks beautiful and you would not know it is a wig. Having said that, she finds it very uncomfortable to wear it for more than just a couple of hours a day. It gets hot and itchy. So, she only wears it when going out and for limited…[Read more]

]]> 9dccd44c19c0e1bd7fb471c8d2a185ac Gala Connell replied to the topic Bewildered in the forum Newcomers https://www.myeloma.org.uk/forums/topic/bewildered/#post-137676 Wed, 18 Apr 2018 18:02:48 +0100 Hi, Linda

It sounds like you have been diagnosed with what is called “smoldering myeloma”. It means that your myeloma is not yet symptomatic. It is true that this stage is usually not treated, as there is no evidence that starting treatment at this stage extends overall or progression-free survival. Treatment, however, can reduce your quality of…[Read more]

]]> 63d995c27da27f2dcb178352ac808147 Gala Connell replied to the topic Daratumumab in the forum Newcomers https://www.myeloma.org.uk/forums/topic/daratumumab-3/page/2/#post-137469 Sun, 25 Mar 2018 11:37:13 +0100 Generally, the policies are very short-sighted. it has now been established that monoclonal antibody drugs, which Daratumubab is an example of, when used as a front-line therapy in combination with either Velcade, Revlimid or Dexamethasone have superior affect on the overall outcome, producing a deeper response upfront. The earlier MM processes…[Read more]

]]> aa477683a7cdef7b30453f7703302864 Gala Connell replied to the topic So scared in the forum Newcomers https://www.myeloma.org.uk/forums/topic/so-scared/#post-137462 Fri, 23 Mar 2018 21:25:01 +0000 Sorry about the gibberish in my post. I think it was some weird technical glitch. In case you struggled to read it, here is what I wrote:

<span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; font-size: 13px;”>”One can suspect it, but specific tests need t be done, such as SPEP (Serum protein…[Read more]

]]> c2917ca079ab534b20ea41a633c883b0 Gala Connell replied to the topic 11years from diagnosis in the forum General https://www.myeloma.org.uk/forums/topic/11years-from-diagnosis/page/2/#post-137460 Fri, 23 Mar 2018 20:52:09 +0000 Mike, I wrote my comment and then saw that you had already commented within the same lines đŸ™‚ But maybe it’s a good thing and would draw attention to this issue, that is often overlooked by professionals who have not seen many cases of MM. So, we as patients have to advocate for ourselves and our loved ones.

Sheena, I am glad that this is what…[Read more]

]]> 3472ea32f8b837bc3b6c5100226e5f8e Gala Connell replied to the topic Daratumumab in the forum Newcomers https://www.myeloma.org.uk/forums/topic/daratumumab-3/#post-137459 Fri, 23 Mar 2018 20:40:05 +0000 I also signed the petition. It is astounding that the obvious and evidenced treatment options are denied, when they are life-saving! Darzalex is used in combination, I think, in all developed and some developing countries, except England. This is very sad. Also sad that people after four lines of treatment are virtually written off, though if the…[Read more]

]]> eeea71d887b73e22bddc919673b74900 Gala Connell replied to the topic Ultra High Risk?? in the forum General https://www.myeloma.org.uk/forums/topic/ultra-high-risk/#post-137447 Thu, 22 Mar 2018 22:47:11 +0000 Hi Emsie

I would not be able to comment on the particular genetic abnormalities, just I am surprised that high risk of myeloma is presented as contraindication for an allo transplant. It is the most aggressive treatment out there and high risk myeloma requires aggressive treatment. What would make sense is your husband’s general health and level…[Read more]

]]> 260383101c2b70cda928da149b409e40 Gala Connell replied to the topic neutropenia in the forum Side-effects https://www.myeloma.org.uk/forums/topic/neutropenia/#post-137445 Thu, 22 Mar 2018 22:36:09 +0000 Hi Smilne

Glad to hear things worked out for your dad’s treatment. I hope it goes smoothly.

]]> 88ea00848e486c9fcb9a8d3943cb65ee Gala Connell replied to the topic 11years from diagnosis in the forum General https://www.myeloma.org.uk/forums/topic/11years-from-diagnosis/page/2/#post-137443 Thu, 22 Mar 2018 22:30:47 +0000 Sheena

Myeloma can become non-secretory over time, meaning that its markers may not be present in the blood. In my sister’s case, when she had her blood taken following renewed bone pain, the M-gradient was at zero. However, MRI showed new lesions in several locations, including soft tissue involvement. She is now undergoing an aggressive chemo…[Read more]

]]> 06726c73210af075199098ac69c07946 Gala Connell replied to the topic So scared in the forum Newcomers https://www.myeloma.org.uk/forums/topic/so-scared/#post-137442 Thu, 22 Mar 2018 21:58:05 +0000 Hi Swandog

I m sorry to hear about your mum’s health troubles. As far as I understand, a definitive diagnosis of myeloma cannot be made from such general tests. One can suspect it, but specific tests need t be done, such as SPEP (<strong style=”background-image: initial; background-position: initial; background-size: initial; background-repeat:…[Read more]

]]> 0995c52a78e2b70e51c74eb189d69514 Gala Connell replied to the topic neutropenia in the forum Side-effects https://www.myeloma.org.uk/forums/topic/neutropenia/#post-137392 Wed, 14 Mar 2018 23:48:00 +0000 Just noticed that you posted quite some time ago. How’s your dad doing?

]]> 9529181f5f10efdff1102e1b1ef2c078 Gala Connell replied to the topic neutropenia in the forum Side-effects https://www.myeloma.org.uk/forums/topic/neutropenia/#post-137391 Wed, 14 Mar 2018 23:45:40 +0000 Hi Serena

My sister has had low WBC counts long before she was diagnosed. The treatments drive those down to seriously low levels. She does have to do Neupogen shots on a regular basis between and especially prior to pretty much every round of treatment and she has had a lot of rounds. Obviously, it is not ideal, but this is the only way to…[Read more]

]]> 01910f1e23f41206685b55d46b757af7 Gala Connell replied to the topic Daratumumab in the forum Newcomers https://www.myeloma.org.uk/forums/topic/daratumumab-3/#post-137375 Sun, 11 Mar 2018 12:21:44 +0000 Thank you, Paula. I have applied to join the group on Facebook.

]]> 5b9e8c7c9f85ec75a21a79f599a0bcac Gala Connell replied to the topic Daratumumab in the forum Newcomers https://www.myeloma.org.uk/forums/topic/daratumumab-3/#post-137369 Fri, 09 Mar 2018 20:29:32 +0000 Hi Gerry

What petition is that? I would like to sign it also. How can I access it?

Thank you!

]]> 0bbee5395dfe595164676c846204aaa9 gala changed their profile picture https://forum.myeloma.org.uk/activity/p/50967/ Thu, 07 Sep 2017 10:52:03 +0100 0 047fa1918d5e29f451ef4ee33df8fac1 gala became a registered member https://forum.myeloma.org.uk/activity/p/50190/ Fri, 23 Jun 2017 04:30:31 +0100 0