[johnandjunediamondParticipant]

turns out june has this horrible addition and as othier's have said " if MM was not enough " we have to wait now for an appointment to visit london for the SAP scan, meanwhile he has said she can come home after her final chemo on monday,so busy preparing

[MariParticipant]

Hi John and June,

my husband Steve has also been dianosed with AL amyloidosis. You are right, it is nasty. He went up to the NAC in the Royal Free hospital in london. They were very good, they put him up in a hotel across the road over nightand he had the SAP scan and he had a fat biopsy from his tummy. He also had to go to The Heart Hospital in Marylebone for a Heart MRI which confirmed he has cardiac amyloidosis. There seem to be so many side affects of this disease, he has a very sore mouth and his jaw muscles get tired very easily. He also has carpal tunnel syndrome which is also related. We are struggling to get our heads around it. Like myeloma the symptoms can be very variable and individual. I am still stunned as to how this happened. His light chains were measured at 890 by the Royal Free but thankfully his kidneys have not been affected, yet.

I don't know if June has been to London yet but I hope everything has gone well for her,

Best wishes,

Mari

[johnandjunediamondParticipant]

thank's for reply mari,
iv'e not been on for a while after june was told she could go home ( fri 26th july )
in the early hrs of the next morning she collapsed with an ulcer in her small intestine
and has been in intensive care ever since,unconcious for 5/6 day's her chemo has been stopped for now,whils't she recovers,so we never got to the sap scan stage but presume that amyloids are present within her stomach,although i have been told that dex in tablet form can cause ulcer's,think she will have to have it infused in the future!!
VERY SCARY PERIOD FOR US!!

[bandityogaParticipant]

Hi John

sorry to hear about June. My husband had sepsis and was out of it for about a week but he sruvived and has come a long way since being diagnosed. Hopefully he will be mobile and come home from hospital soon. He has been in hospital for 10 months as he had to have an op for compression of the spine. Everything is scary at the start but we learn to adjust. I just keep praying and find comfort in my faith.

Hope June recovers soon.

Maureen

[johnandjunediamondParticipant]

thank you maureen,
10mths wow!!junes stir crazy after a couple of week's she hasn't had much fun with hospital's over the year's, best wishes from us for his early release .

[MariParticipant]

Hi John,

So sorry to hear your news, that certainly does sound scary. I guess it is probably the amyloids that have caused her problems in the intestines. Steve has it in the soft tissue of his mouth and he has terrible ulcers and swollen salivary glands. They come and go and are controlled by mouth washes. It makes eating difficult.

Usually dex and other steroids are prescribed with PPI's ( proton pumps inhibitors) like lanzoperzole and omeperazole which should protect the stomach.

I do hope June starts to feel better soon. We have been told that the meyloma chemo is the same treatment for amyloidosis and it can halt the progress of the laying down of the amyloid proteins in the tissue. Steve has deposits in his heart, which are causing heart failure. He is on a small dose of revlimid and we are beginning to see small changes in the myeloma but nothing in the amyloidosis.

I don't think you will have missed much by not going for the SAP scan. It was a biopsy which confirmed Steve diagnosis and the NAC have not been involved in his treatment or advised us about the future at all.

Good luck with you journey and i hope you can bring June home soon,

Much love Mari xx

[MariParticipant]

Hi Maureen,

I have not been on the forum for a fair while and I had missed that your husband had such a bad time, especially with the spinal compression. This was something that Steve went through when he was first diagnosed. He lost the use of his legs, it was devastating, but I don't need to tell you that.

I don't know how your partner is doing, but it may help to know that Steve has been able to regain his ability to walk, although he is happier swimming or cycling. Sadly he will not be doing any of these any more as his heart is failing, but we have had some very good times, since his operation in January 2010. I hope things will get better for you.

Much love Mari xx

[johnandjunediamondParticipant]

thanks mari,
june was sent back to ward last night, she is very weak/fatigued,but hopefully we can now restart the journey and make some progress 😐

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