LUPUS UK
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Update on results

Good morning everyone, I have just been diagnosed with a rare form of lymphoma called nodal marginal zoneB-cell. I have been losing weight for over a year, told loads of doctors about it, had tons of blood tests and still doctors missed it. My rheumy doc said all my bloods were ok but then my gp noticed my kidney function bloods were not quite right. I've been getting monitored for 6 months now. I've had stomach problems for a year, gastro appointment took ages to get and I'm still waiting on more tests from him, because I have MCTD there is a higher risk to getting this, our lovely immune systems like to play around in our bodies. It was the lump in my neck that concerned my doctor, we all get lumps that come and go in our neck, but it is wise to be vigilant as I will be from now on. Ct scans, biopsies and Bone marrow tests found I have abnormal lymph nodes around my kidneys, in my stomach and lungs, hence the weight loss and stomach problems. Fortunately it is a low grade lymphoma as I've probably had it for years. My next chapter will be six months chemo with rituximab and 70mg of steriods and other drugs. It's the steriods that worry me more than the chemo, I didn't cope well on 40. Anyway I'm staying positive and from now on I will be harassing doctors a lot more till they take me seriously.

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Hi Lizard28. 😊🌸🌿🦋

I’m sooo sorry to hear about your rare lymphoma...it just couldn’t have been the common one... could it??? Bless you...you have really had a hard road to travel in your illness journey. Like you I have MCTD too. Thanks for sharing about the neck lump warning. 98% of my family has succumbed to cancer. Sad to say I’m acquainted with it all too well.

Yes never let the doctor poo you off with whatever you see them for. Be very assertive in your care.

I hope and pray 🙏that you will be able to tolerate your treatments and no setbacks of any kind.

Be positive and fight with all your might. I have just prayed for you.

Please take care and keep us all updated on your progress...if you don’t mind and you feel up to it okay??? Sending gentle gentle hugs 🤗 love 💕 and kisses 😘 and healing prayers 🙏 to you.

😊🌸🌿🦋

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Thank you honeybug, at least I know what I'm dealing with, I was beginning to think I was making it all up, doctors just kept telling me, I'm not underweight, that wasn't the point, I'm down to a size 8 now and being sick all the time wasn't normal. I feel as if I've been let down with doctors. My rheumy didn't even notice the gfr in my kidneys were stage 3b ckd. The last time I got a doctor training to be a rheumy, told me to go to an optician and didn't know what was wrong with me. I will be a different person now. Thank you for your support and for the prayers and hugs xxx

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You’re welcome. I’m so sorry that it is so hard to get the health care needed and it isn’t easier.

It’s like that here sometimes in the USA 🇺🇸 depending on our individual insurance coverage.

We call the the newbie doctors fresh off the farm, wearing training underwear or similar remarks. Why on Earth would an optician see you for a renal problem??? Did he think you would pee out of your eye???

REALLY???!!!

I’m sooo sorry you’ve been so sick that you’re down to a size 8. This sounds like an American size.

You’re welcome dear. Glad I could be of some help to you.

Take care xxx

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Hi Lizard 28

Sorrow about the double reply. Some snafu the post disappeared and said a problem with it so I tried to repeat it. Seems like so many of us are having posting problems. Have a good/great day. 😊🤗💕😘

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You’re welcome. I’m so sorry that it is so difficult to get health care easily. It frustrates me to no end about the endless hoops everyone has to jump through to get anything done. In the USA 🇺🇸 it sometimes does this depending on our individual insurance coverages.

I just hope and pray that no more delays occur and you will get the proper care for everything from now on.

Stay strong persevere and stand your ground when necessary. Have faith in yourself stay positive as much as possible taking things one day at a time.

Best wishes xx

😊🌸🌿🦋

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So sorry to hear that but fingers crossed the treatment works quickly and effectively. Know what you mean about worrying about steroids. What did you feel on 40? It might not be much worse on 70.

X

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I felt very jittery, shaky, emotional, nose bleeds,didn't feel or look like me, hated the moon face which really upset me, insensitive people that told me I'd put weight on which was my face and under my chin only, good bit was the first week on them I felt really good. Gosh reading that I think I will hibernate for six months, at least I'm not working now. My colleagues said they cudnt put up with me on them lol, I was running around like mad doing everything, when I told them they jokingly said thank god you at not at work.

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Oh Dear....That is hard news to hear.....Glad it is low grade...I have been through Breast cancer(2005) and melanoma(2013).. Lupus DX 2017....I'm still here!! xoxoxo My Best to you

xxliesel

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leslieliesel. 😊🌸🌿🦋

I’m sooo sorry about all the horrific things you have gone through. Bless you and I pray that you will continue to persevere in your health journey.

😊🌸🌿🦋. 🤗💕😘

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Thank You honeybug Xx

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Thank you so much xx

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Thank you, it's still hard to take it all in, but your reply means a lot to me xx

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Yes it is hard... it took me a VERY long time to be able to live WITHOUT fear...If I knew the day would come that I didn't panic every waking moment, I may have been less fearful a lot sooner..... Xx....

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