Recent Posts

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General Discussions / Re: How to eradicate despair
« Last Post by Monica1 on May 30, 2021, 04:56:14 pm »
I am still in kings and treatment has still not started. Nothing happens at weekends and bank holidays. Today I read the clinic letter from the NAC and just cried.  There have been such major delays in treatment, now the third bank holiday where nothing happens.  My B.p is being propped up with midodrine and I am having horrible side effects from It. There is no one to talk to here. I wish I could talk to someo e who can offer me some hope.
General Discussions / Re: Why not Dara?
« Last Post by Linda R on May 30, 2021, 12:42:00 am »
Hi Justme,

From reading your post, it looks like the CyBorD is your wife's first treatment. I believe that Daratumumab typically is reserved for relapsed patients. Will your wife have a stem cell transplant? I'm in Scotland, where Dara is available in combination with other drugs either for first line (followed by SCT) or as second line treatment (i.e. after relapse), or on its own as fourth line. For any treatment regime there always seems to be conditions attached, and that can impact on whether we can access that treatment. Can you discuss it with the consultant?

After my own relapse two years ago, the intention was to put me on Daratumumab. I had previously received CyBorD, then VTD (Velcade, Thalidomide, Dex), and Thalidomide/Dex maintainance, which put me in remission for over three years. I actually started treatment a few days ago, but not Daratumumab (it's a long story but over the last nine months I have had many new investigations and now been diagnosed with a rare type of B-Cell Lymphoma as the cause my AL Amyloidosis).

Best wishes, and good luck with your quest.
General Discussions / Re: MGUS and concerned about Amyloidosis
« Last Post by Miriam Vered on May 28, 2021, 06:39:59 pm »
Good luck. I hope you manage to relax and enjoy your baby and put this anxious time behind you.
General Discussions / Re: MGUS and concerned about Amyloidosis
« Last Post by Tiger87 on May 28, 2021, 06:26:26 pm »
Thank you so much for taking the time to read, respond and consult with Professor Hawkins about my situation, Miriam. I really appreciate it as I have been sick with worry. The echocardiogram thankfully came back normal. I have since noticed some ridges from my teeth on the sides of my tongue, but I am really really hoping this is just a result of jaw clenching from the anxiety that has been going on during this process of searching for answers over the past few months. The plan is now to do a bone marrow biopsy after I have the baby just to cover all the bases and hopefully mostly eliminate the possibility of amyloidosis.
General Discussions / Re: Newly diagnosed, very scared
« Last Post by maria1 on May 23, 2021, 06:59:09 pm »
Hello everyone. I'm new to the forum. I was diagnosed a year ago with multiple myeloma and familial Amyloidosis. I'm finding it difficult to go from being very active to barely being able to walk my own length. Sorry for the doom and gloom
General Discussions / Why not Dara?
« Last Post by Justme on May 22, 2021, 07:54:31 am »
Hi everyone. First post on here. My wife has just started treatment (CyBorD) for AL Amyloidosis after a long and rocky road to diagnosis that echoes many on here.
We have been reading about the Dara studies which seem to show real promise in improving outcomes and therefore can’t understand why she wouldn’t have been put on this too. Can anyone share their experience or insights please? Thanks in advance.
General Discussions / AL amyloidosis - first line treatment
« Last Post by freecurry on May 21, 2021, 10:48:23 am »
I'd be really grateful for any observations from those forum members who've already been through treatment as to the rationale used for ceasing their initial treatment when there had been a response.
My husband has completed two cycles of CyBordD for his newly diagnosed AL amyloidosis (heart, liver spleen and GI tract) and is now midway through cycle three. It's been tough so far but the good news is that it appears to us that he's responding. At his initial NAC visit his Kappa light chains were 191 (Lambda 16.6) and at the end of cycle two Kappa were within the reference range at 14.7 (Lambda 4.0). According to the really helpful end of cycle notification of results from the NAC his dflc was 94.
The pandemic has made dealing with any health issues challenging as telephone consultations don't really allow one to build up any rapport with the clinician or to talk things through as one would at a face to face meeting. At the telephone review with the local haematologist prior to commencing cycle three we asked what would happen if/when his light chains normalised and the answer was that he'd have 6 - 8 cycles anyway. We know that the NAC will review results following cycle three but don't know how long this would take or how much influence their feedback would have on local clinicians. Obviously we're content for him to continue treatment for as long as is clinically necessary but equally we don't want him to endure more than is actually required.
General Discussions / Re: How to eradicate despair
« Last Post by Miriam Vered on May 20, 2021, 02:14:54 pm »
Hi Monica,
I'm very sorry to hear what a bad time you have been going through.
I suggest contacting Darren Foard, Specialist Research Nurse at the NAC to see if he can help:
If you send me a personal message with your full name I can also ask the NAC doctors about your case and check if they can help at all.
General Discussions / How to eradicate despair
« Last Post by Monica1 on May 20, 2021, 01:39:56 pm »
I have been in kings college hospital,for a month and all they have done is prop up my kidney function with iv fluids. My visit to the amyloid centre on 11th May was depressing, amyloid in kidneys, spleen and liver plus heart. They are sending me home today to have all outstanding investigations as an outpatient. Long waits for cardiac mri and whole body mri. I have to say I am pretty disgusted. Told at centre 4 months left without treatment. I can’t wait t9 get,out if kings but even after all this time no treatment at all. I am going to the national newspapers tomorrow. Absolute despair that no treatment given.
General Discussions / Re: Wild Type ATTR Amyloidosis
« Last Post by Miriam Vered on May 19, 2021, 09:39:55 pm »
A balanced, healthy diet including plenty of protein and a wide range of foods is usually advisable for most patients with wtATTR amyloidosis. It can be helpful to meet with a dietician for precise and personalised dietary advice. Many patients with ATTR amyloidosis affecting the heart (cardiac ATTR amyloidosis) should limit their fluid intake. Strict fluid balance control is important. Specialist heart failure nurse involvement may help patients to achieve this. Fluid excess can be avoided by careful attention to the 3 Ds:1.   Diet2.   Diuretics3.   Daily weightsFor more information on fluid balance control see here:
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