Hi, I too have Waldenstroms I had 6months of bendamustine /rituximab, my paraprotein is down to 4 since post chemo. How have you been since post chemo? I feel very isolated by this disease as no one understands how I feel, weakness and fatigue.
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Hi, welcome to the forum. I have no experience of WM but if you click on reply under @AnnD you will be able to have contact with her. Also if you click on 3lines at the top right it will take you to different topics which you can explore. I hope this helps. Best wishes
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Hi, A big welcome to you, I hope you find the site supportive. I am still ānavigatingā this community forum, donāt worry it takes time. @Pisces56 has given you some help I hope. I have found what we appear to share is a lot of the fears, 'what ifās, thoughts and feelings. You seem to have sussed the art of posting, please keep posting.
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Hi
I think the weakness and fatigue is something that goes with the territory.
You have been through a lot and I think we are too hard on ourselves. There is a feeling that now Iāve had treatment I need to get on and get back to normal, sometimes this comes from others too.
It takes time, little by little. Do what you can when you can.
I was really lucky through treatment that I really carried on as much as possible, as normal, I think that really helped. I volunteer at my local hospital a couple of mornings a week and even managed to carry on doing that.
Next time I may not be so lucky! Who knows.
It really has been the mental side that effected me and didnāt find much help out there. I have had a lot of support from other forums and as I said by going to the Maggieās Centre.
Yes WM is rare but there are more of us out there than you think. Try the IWMF site and forum people are so ready to help and give support and because itās dedicated to WM you know you are talking to others who are experienced with the knowledge they have gained.
I do get odd aches and pains even now, are they connected, no one seems to know and when I mention it at my clinic appointments the answer is usually a shrug or non commital. Frustrating!
I have become more conscious of my body and have had a few panics but am becoming more confident that I can deal with the unexpected.
You have good result with your paraprotein, mine is currently at 8 and Iām hoping for a further drop, maybe, at my next appointment.
Iām sure you will feel better as you go along and summer is coming
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Hi, thanks for your replies. Good to hear you are active and feeling OK. Iām in muddy waters atm, I also have thyroid problems which one of the main symptoms is fatigue, I have been ill since Jan just finished my 3rd lot of anti biotics. The fatigue is quite over whelming but am seeing gp next week to see if itās the lymphoma or thyroid or probably both. No there is no maggies centre near me. I am on the wm closed group on Facebook that has been very helpful for me.
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Yes, we are complex beings and it must be difficult to say if your fatigue is down to your ongoing lymphoma, your thyroid, having had 6 mths on chemo, having been ill and on antibiotics since Jan or a combination of all. Just think about what you have been through emotionally and physically, you must have really depleted your batteries. Please let us know what your GP says and take lots of care of yourself and spoil yourself.
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Hi Joshua I have not been diagnosed but a free light chain blood test came back with an elevated lambda of 113 and low ratio of .012 but no paraprotein present. the test was conducted by a Rheumatologist who then wrote to my Haematologist about my results, but no reply was received. I asked the Rheumatologist whether a paraprotein is something which can simply appear and he said it can, but its not something that is regularly tested for. I am having many strange symptoms like weight loss, nausea, fatigue, pelvic bone pain, hot flushes. i just wondered if that is something i am able to discuss here as i am worried whilst i await the reply from the Haematologist. Thank you.
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Hi Elizabeth. I have no idea what these results mean, and I can understand how anxious you must be feeling, especially when you think about the symptoms and pain you are experiencing. How long have you been seeing a haematologist and is it possible to speak to the secretary? Who referred you for the blood test? If it was your GP you could check whether a copy of the results has gone to the surgery. I hope you have news soon
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Hello Elizabeth
I am sorry you find yourself in this position, I understand how tough it is waiting for results, you donāt really know what to feel and its very confusing and unsettling. Do you know how long you will have to wait for the results? With the symptoms you have been experiencing I hope you donāt have to wait longā¦ you say that your Rheumatologist didnāt get a reply from the Haematologist ā¦ has this been chased?
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Hello Julia
Welcome, though we have different types of blood cancers I do understand how you feel regarding the weakness, fatigue and no one understanding it. This forum is a good place to talk about things and Iāve found that being able to be totally open and honest because its a safe place helps me because those around me donāt always get it. Iāve found the fatigue overwhelming and difficult to adjust to.
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Hi Elizabeth, welcome, just reading your post I can sense your worry and that horrible feeling of not knowing. I know my mind would go into overdrive with fears, āwhat ifāsā etc. Please do chase the results up and let us know how you get on, we are all there to support you.
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Thanks so much for the replies and making me feel so welcome. 
The rheumatologist seemed convinced this absence of paraprotein meant that my elevated lambda and low ratio were āof no clinical significanceā, although his letter states that he can provide no explanation for this, which is unsettling. I asked him why there are ranges if they dont matter? He seemed tiny bit exasperated that I was even asking, but I appreciate he is a busy man. I saw the Haematologist first and he seemed to want to pin things on menopause (I am 45). I do not believe he will reply to the Rheumatologistās letter. I feel like I would be annoying them to even chase as I think they are ādoneā investigating me. Labs also revealed low platelets (78 at lowest) and low neutrophils. I also came back ANA postitive 1:1600; 1:1280, but tested negative for all the usual suspects. I was diagnosed with immune cytopenia, but maybe my lack of platelets and WBC are due to something other than autoimmune. Rheumatologist even commented that it was interesting that two different types of blood cells were lowered. My concern is that my blood cells are coming back low, my lambda is elevated, my ratio is low, Ive lost a stone in weight without meaning to. Im not in severe pain but my pelvic bone aches and I am nauseaous and lightheaded alot and feel exhausted when i was an energetic person a year ago. To me, the lab results are trying to point at something related to my blood, so I just wondered if anyone knows why a person might have an elevated lambda and low ratio and it not matter. I have thought about just paying myself to have another blood test in a few months just to check there is still no paraprotein and I wish I could just have a bone marrow biopsy to be certain, but Im not sure if I am just panicking and overthinking. Thank you all so much for reading and caring. x
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Hi, My name is Lyn, I was diagnosed with T cell Lymphoma/mycosis Fungoides n August 2017.
I attend regular clinics, I am having PUVA treatment and a few radiotherapy sessions on particular lesions.
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Welcome Lyn. I hope you can find posts on the forum that are useful to you. If you click on the 3 lines at the top it will guide you to subjects covered. How does your treatment affect you?
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Hi Elizabeth, I am not a medical person and nearly all the results you are talking about are far too technical to me, but because you are still concerned about the lingering symptoms at the moment perhaps it is returning to your GP to discuss your way forward be it NHS or private (depending on the cost). I have found writing down all my questions, fears, concerns, thoughts and feelings and make sure I ask them all, I now realise I am entitled to. Take care and let us know how you are doing.
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Hello Lyn
Welcome to the forumā¦ I hope you find this as much of a help as I have. We have different blood cancers but I am sure the emotional and physical demands will be similar. If there is anything in particular you want to discuss please donāt hesitate to start a new topicā¦
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Thank you for your welcome! To have my PUVA treatment, I have a 95 mile round trip every Monday, which is tiring in itself, but Iām very grateful for the treatment and the staff at the hospital are superb.
I see a dermatologist once every 3 months and an oncologist every 4 months. Iām on watch and wait which I find difficult, the treatment I receive is dealing with the effect but not the cause - I find this difficult to understand and accept. I get on with my life from day to day, but confess to having private melt downs!!
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My goodness, you must just about recover before you do it all again. When I was having treatment I used to āsilent screamā in the bath with the radio on loud. I also had meltdowns in public places. The only place I was ok was in hospital. How strange is that?
There are a lot of people who have posted about Watch and Wait. If you click on the 3 lines at the top you can see the main headings of topics covered. I hope being on the forum will help you
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Hi AnnD
Many thanks for your message which is most formative. I have to say this is the first forum Iāve joined and yes like you say there arenāt many of us WM-ers!
How are you doing and how are you feeling? How did you find your treatment? My treatment was spread out over the 16 months. I would have it every week for 4 weeks then an 8 week recovery. It left me feeling bloominā awful most times but it seems to have done what it was supposed to do. Are you now in remission also??
Sara x
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@Alwenan Welcome to the forum Lyn, I hope you find it welcoming and friendly! Our section on watch & wait can be found here https://forum.bloodcancer.org.uk/c/watch-and-wait, Iām sure youāre not alone in finding watch & wait a challenge, perhaps sharing some of your worries or ways of managing it will be helpful to yourself and others?
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