Jane's MGUS journey continued http://janemarleyfromtheuk.healthblogs.org My experience with a strange medical condition called MGUS a precancerous condition which has progressed to Smoldering Multiple Myeloma Wed, 08 Oct 2008 22:26:41 +0000 http://wordpress.org/?v=2.6.3 en Another update http://janemarleyfromtheuk.healthblogs.org/2008/10/08/another-update/ http://janemarleyfromtheuk.healthblogs.org/2008/10/08/another-update/#comments Wed, 08 Oct 2008 22:24:02 +0000 janemarleyfromtheuk http://janemarleyfromtheuk.healthblogs.org/?p=26 My most recent immunoglobulin treatment went well, but my results weren’t so good.

I have now got hyperviscosity (thick blood) which explains the tiredeness I have been feeling.

My Igg is 42 and my paraprotein is 31, my Haematologist said that chemotherapy usually starts when the paraprotein level reaches 30, but she is still keeping me on a watch and wait because all my other results, like x-rays and kidneys etc. are all ok.

I learnt something at my appointment, that is never ever ask a question unless you are fully prepared for the answer. i asked if and when my smouldering myeloma would turn to full blown multiple myeloma, and my Haematologist said that by the trend of my results, I will definately need chemotherapy within 5 years, scary and not the best news inthe world.

I am being re-staged in March 2009, all my bloods, urine, bone marrow, x-rays and an MRI scan will be put together to stage me, hopefully I will still be smoldering and not any worse. I am keeping busy and upbeat and my haematologist told me to keep occupied, go on holidays and excercise to avoid stress, I took that to mean, do everything while you are well enough to do it. I enjoy my life and I have far too much to do to mope around feeling sorry for myself, my new house isn’t going to decorate itself, and I wont pass my degree sitting worrying, so life well and truly goes on for me. :-)

]]> http://janemarleyfromtheuk.healthblogs.org/2008/10/08/another-update/feed/ Its been a long time, sorry :-) http://janemarleyfromtheuk.healthblogs.org/2008/09/21/its-been-a-long-time-sorry/ http://janemarleyfromtheuk.healthblogs.org/2008/09/21/its-been-a-long-time-sorry/#comments Sun, 21 Sep 2008 20:52:13 +0000 janemarleyfromtheuk http://janemarleyfromtheuk.healthblogs.org/?p=24 Hi all,

I am so sorry I have not updated my blog for ages.

I have been doing well on my immunoglobulin treatment, no side effects other than tiredness for a day and a major headache for a day each time. Theres not much to report where my blood test results are concerned, they are fairly stable but are creeping up very gradually. I took a course of preventetive medication to stop my shingles/herpes virus recurring, it worked for a time but this week I have ended up with another outbreak, so I am back on 800mg of Aciclovir 5 times a day. I am going to be taking Aciclovir for life now to prevent the Herpes virus recurring, I am going to be prescribed 200mg 3 times a day for life !!! I have been suffering rib pain for over a week now, my GP said my chest sounds clear but it could be slight pleurisy so he has prescribed me antibiotics just in case. The rib pain has not improved and I am now worried that my smoldering multiple myeloma may have progressed to full blown multiple myeloma. I have been having a lot of leg pain and lower pain lately too. I phoned the Macmillan unit, where I go each month for my treatment and told them about my rib pain and herpes outbreak and they want to see me next week on 24th Sep 2008 to run extra tests, I am due for my next immunoglobulin treatment on 1st Oct 2008. I think my Haematologist will order another bone marrow biopsy to see what is going on and probably a chest x-ray as well as the usual blood and urine tests. I will try and remember to update this blog with the results and outcome of my appointment.

I have written an e-mail to the Cancerbackup Nurses which have now joined forces with Macmillan Cancer Care, I have asked for some advice from them as they are brilliant at helping answer questions and giving support. I will update my blog if I get any info which is interesting.

Be in touch soon :-) xxxxx

]]> http://janemarleyfromtheuk.healthblogs.org/2008/09/21/its-been-a-long-time-sorry/feed/ 2nd Immunoglobulin treatment and results http://janemarleyfromtheuk.healthblogs.org/2008/04/09/2nd-immunoglobulin-treatment-and-results/ http://janemarleyfromtheuk.healthblogs.org/2008/04/09/2nd-immunoglobulin-treatment-and-results/#comments Wed, 09 Apr 2008 23:56:31 +0000 janemarleyfromtheuk http://janemarleyfromtheuk.healthblogs.org/2008/04/09/2nd-immunoglobulin-treatment-and-results/ My Intravenous immunoglobulin treatment went fine today, I am left feeling tired once again but not as bad as last time at the moment.

The good news is my IGg level has dropped from 44.8 to 37. The bad news is my paraprotein ( myeloma burden ) is on the rise and since 2005 has risen from 13 to 29.5. When this level has risen to over 30 and it inevitably will, then my specialist will decide whether to start treatment (chemotherapy) but it will be based on how my general health is and whether there are any other factors to warrant starting treatment.

My MRI scan results show that I have 3 discs causing problems, one is torn and 2 are burning out and dehydrated, these discs are all in my lumbar spine, its not myeloma related and at least I now know why my back hurts.

The caravan renovations are going brilliantly and I am really enjoying keeping occupied and using my interior design skills, I cant wait to take off to spain in my caravan in June.

]]> http://janemarleyfromtheuk.healthblogs.org/2008/04/09/2nd-immunoglobulin-treatment-and-results/feed/ Whoops Ebay http://janemarleyfromtheuk.healthblogs.org/2008/03/30/whoops-ebay/ http://janemarleyfromtheuk.healthblogs.org/2008/03/30/whoops-ebay/#comments Mon, 31 Mar 2008 00:58:06 +0000 janemarleyfromtheuk http://janemarleyfromtheuk.healthblogs.org/2008/03/30/whoops-ebay/ I accidentally brought two caravans (holiday trailers) on Ebay whoops! I am now using my interior design skills to renovate one of them to put it back on Ebay, I wont make a profit on it, I am doing it purely for a challenge. The other caravan is going to be going on a road trip, we are taking it from Portsmouth in the UK onto a ferry to Biloba (33 hours) in Northern Spain, then we will travel right across to Southern Spain to Denia a (9 hours) and then from Denia to Ibiza in the Balearic Islands of Spain. Once in Ibiza we have found a campsite to leave our caravan on so that we can have family holidays there, it’s only a 2 hour flight from the UK.

I am not feeling too great today, I am a bit dizzy and my legs, hips and back are so painful that I can’t sleep. I have taken Paracetamol and codeine, Tramadol and Ibuprofen but nothing has worked so I am sitting here at 01:48 writing my blog. I have been sneezing as well today so I hope I am not coming down with a bug, I shouldn’t be because of my immune treatment.

I have been busying myself on Facebook as well playing games and talking to friends, Facebook can be quite fun in a goofy kind of way. Catch you all later xx

]]> http://janemarleyfromtheuk.healthblogs.org/2008/03/30/whoops-ebay/feed/ My new treatment http://janemarleyfromtheuk.healthblogs.org/2008/03/20/my-new-treatment/ http://janemarleyfromtheuk.healthblogs.org/2008/03/20/my-new-treatment/#comments Thu, 20 Mar 2008 16:42:04 +0000 janemarleyfromtheuk http://janemarleyfromtheuk.healthblogs.org/2008/03/20/my-new-treatment/ I had my first infusion of Sandoglobulin IV on 12th March 2008. It is basically immunoglobulins (infection fighting cells) taken from about 20,000 blood donations, its taken from the plasma part of the blood, its heat treated to remove viruses and then feeze dried. At the Macmillan cancer unit it is then mixed with a saline solution and then given to me by intravenous drip. The treatment went very well and the only side effect was fatigue for 2 days. I have to have the treatment each month for six months, my next one is on 9th April 2008. This treatment is a measure to attempt to keep my infections under control, it will not help my Smouldering Myeloma. It is not known whether this treatment will work for me so it is just a trial for 6 months, if it is not effective they will stop it.

I have had an MRI of my spine and I have had a skeletal survey of my whole sleleton by x-ray, I wont get the results until 9th April. These tests are done to monitor my bones as myeloma can cause them to lose density and can cause holes/lesions to form in the bones making them fragile.

My symptoms are still the same achy legs, hips and feet and hot sweats but no new ones have developed so that is good news. Mentally I am coping exremely well and I am doing just fine.

]]> http://janemarleyfromtheuk.healthblogs.org/2008/03/20/my-new-treatment/feed/ More results and treatment http://janemarleyfromtheuk.healthblogs.org/2008/03/07/more-results-and-treatment/ http://janemarleyfromtheuk.healthblogs.org/2008/03/07/more-results-and-treatment/#comments Fri, 07 Mar 2008 23:07:51 +0000 janemarleyfromtheuk http://janemarleyfromtheuk.healthblogs.org/2008/03/07/more-results-and-treatment/ I went for my follow up today after being told by my Haematologist last week, that she was 80% sure my MGUS had turned to myeloma and that I may need to start chemo. My Haemo had a video conference with a big UK cancer specialist hospital, with several myeloma specialists in attendance. STILL they are not sure whether I need chemo, some said I did and some disagreed, in the end they told my haemo it was back to her to decide the best course of action for me. I am such a difficult case that no one seems to know what is going on. I asked for a diagnosis and my Haemo says I now have smouldering myeloma.

My latest results are the same as the ones from a week ago

Bone Marrow Plasma 25%

IGg paraprotein 44.8 (UK) 4480 (US)

IGM is too low

IGA is too low

I have hypogammaglobulinaemia

All other bloods and urine are fine

B2 microglobulin is being tested

Blood viscosity is being tested

Blood and urine taken again today dont know when I will get the results.

I forgot to ask for the results of my MRI which was done on Tuesday4th March.

Due to my recurrent infections my Haemo suggested to the panel of specialists that I may benefit from Immunoglobulin transfusion, some of the panel said it could work and others disagreed, but my Haemo has said it wouldn’t hurt to try it. I have now been signed over to the care of the cancer unit (Macmillan Unit) at my hospital, rather than the Haemo department. I Have to attend on Wednesday 12th March at 09:00 for my first transfusion of SANDOGLOBULIN, it will take allday as if it is done too fast there is a risk of blood clots and/or allergic reaction. If my blood is already to thick/viscous then I wont be able to have the transfusion until my blood is thinned out. Sandoglobulin is basically a mixture of Immunoglobulins from a variety of blood donors, its heated and dried to help remove any viruses such as HIV and Hep C and then it is mixed with saline and hooked up to an IV drip. I have agreed to try the treatment but I am obviously worried, but its got to be better than starting chemo.

]]> http://janemarleyfromtheuk.healthblogs.org/2008/03/07/more-results-and-treatment/feed/ Results Day http://janemarleyfromtheuk.healthblogs.org/2008/02/28/results-day/ http://janemarleyfromtheuk.healthblogs.org/2008/02/28/results-day/#comments Thu, 28 Feb 2008 19:30:50 +0000 janemarleyfromtheuk http://janemarleyfromtheuk.healthblogs.org/2008/02/28/results-day/ Hi everyone,

Today I got the results of my bloods and bone marrow biopsy. Lets
just say the news was not good.

My IGG is 4480 (44.8 UK)
My bone marrow is 25% plasma cells and a small amount of myeloma
cells have been seen in the marrow
My Electrophoresis light chain M component is 25g/l
My albumin is 34
MY B2 microglobulin has not been measured but is being done today, I
dont know when I will get the results.

basically my haemo has scheduled an MRI scan for Tueday 4th March and
is having a video conference with another specialist cancer unit in
our area on Thursday morning 6th March and I have to go back to the
clinic at 4.10 British time on Thursday to find out if Chemo
treatment needs to be started. My Haemo is 80% sure that I need
treatment and said that if its not smoldering myeloma then its full
blown Multiple Myeloma, but until she has had the video conference
and discussed my case with the oter specialists, she can’t give me a
100% diagnosis. She has said that I definately no longer have MGUS
and that I have progressed. A full skeletal survey is being done
after the MRI as soon as my aemo can get an appointment for me at the
x-ray department.

I will keep up my healthy eating and my supplements and keep
positive, life dont stop because you get a bit of bad news, and I am
sure as he*! I am not going to be miserable. I dont yet think its
sunk in yet though as I feel numb, but oh well never mind.

Love to you all and I will update you all again on thursday
Best wishes
Love Jane x

]]> http://janemarleyfromtheuk.healthblogs.org/2008/02/28/results-day/feed/ 2 Days to go http://janemarleyfromtheuk.healthblogs.org/2008/02/26/2-days-to-go/ http://janemarleyfromtheuk.healthblogs.org/2008/02/26/2-days-to-go/#comments Tue, 26 Feb 2008 22:45:04 +0000 janemarleyfromtheuk http://janemarleyfromtheuk.healthblogs.org/2008/02/26/2-days-to-go/ 2 days to go until my clinic appointment, every time I go past the hospital on my way shopping I get butterflies in my stomach. I am feeling ok though, my ear infection is clearing up but the antibiotics have given me thrush in my mouth. My Husband’s eye test went fine, it turns out they had the machine set wrong for the last two tests so they apologised and said his eyes are fine, thank goodness. I will update you all after my appointment on Thursday.

]]> http://janemarleyfromtheuk.healthblogs.org/2008/02/26/2-days-to-go/feed/ A bit under the weather http://janemarleyfromtheuk.healthblogs.org/2008/02/22/a-bit-under-the-weather/ http://janemarleyfromtheuk.healthblogs.org/2008/02/22/a-bit-under-the-weather/#comments Fri, 22 Feb 2008 21:05:54 +0000 janemarleyfromtheuk http://janemarleyfromtheuk.healthblogs.org/2008/02/22/a-bit-under-the-weather/ Hi Folks,

I have had a relaxing day today, I have done hardly anything. I woke up this morning feeling a little under the weather, so I visited the doctor and it turns out I have an ear infection. My face and area around my jaw and ear has been giving me pain for days and I finally gave in and went to the doc’s, my ear is very red inside so its infected and I am on antibiotics yet again. This is the 5th lot of antibiotics in 3 months which I have had to take due to infections, never mind as long as they fight the infection and I feel well again, thats what’s important. I’m sure in a few days they will kick in and I will be back to my old self again I have decided I am definately going to ask for a second opinion when I go to the hospital on the 28th Feb, no matter what my results are.

I have to go out tomorrow, I have run out of a few of my health supplements so I have to visit the health store. I also have to buy presents for my Grandsons 4th birthday on Sunday. My Husband has to go to have an eye exam, he has failed two field of vision tests and they have requested he have a third test, so hes having that done tomorrow, I sure hope he’s ok.

]]> http://janemarleyfromtheuk.healthblogs.org/2008/02/22/a-bit-under-the-weather/feed/ Insomnia http://janemarleyfromtheuk.healthblogs.org/2008/02/21/15/ http://janemarleyfromtheuk.healthblogs.org/2008/02/21/15/#comments Thu, 21 Feb 2008 18:44:48 +0000 janemarleyfromtheuk http://janemarleyfromtheuk.healthblogs.org/2008/02/21/15/ I couldn’t sleep last night because I was worrying about my hospital appointment on Feb 28th. I finally went upstairs to bed at 4.30 this morning. I phoned a helpline today and spoke to a specilist Myeloma nurse who was very helpful and she has suggested that I request a second opinion at my next hospital visit to clarify my diagnosis whatever that will be and to generally make sure that the diagnosis is correct and give me some peace within myself and stop me worrying. The nurse I spoke to agreed with me that my numbers/blood levels do not meet the criteria for an MGUS diagnosis, they are too high for that but for whatever reason at present the diagnosis is still MGUS.

MGUS is diagnosed if there is IGg of less than 30 -mine is 44.8

MGUS is diagnosed if the bone marrow contains 5% or less plasma cells - a year ago mine was 13%

MGUS is dx if theres no anaemia - I am not anaemic

MGUS is dx if there are no bone lesions - I have no bone lesions

MGUS is diagnosed if the kidneys are healthy - I have healthy kidneys

A diagnosis of MGUS is usually ruled out with figure like mine especially with the added finding of bence jones protein in my urine and the recurrent infections. Add to that the fatigue and sweats and aches and pains and I think I have something more than MGUS, I really hope I am wrong and that a second opinion confirms that its still MGUS.

I am finding it so tough waiting for these results, every waking moment is filled with fear, fear of hearing those words, Mrs Marley I am afraid you have Multiple Myeloma. To think that this appointment next week could change my life forever and set me up with the fight of my life. I am trying to stay positive and I am certainly not miserable, I am just scared. I hope I am totally wrong and that my gut feeling is totally wrong too. The 28th of February can’t come quick enough for me.

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