Hello everyone, my mum has waldenstroms blood cancer and was diagnosed approx 10 years ago. She was treated in about year 3 as the plasma became thick. The chemo worked and since then her plasma remains normal (tests every 6 months). In the past year she has lost a considerable amount of weight and falls asleep a lot during the day and says how tired she feels. I keep saying about seeing a doctor but she refuses saying that she was once told by a doctor that these are symptoms of waldenstroms yet years ago when I would take her to oncology for tests and to see the consultant, the consultant would tell her she should feel OK because her bloods are normal and she shouldnt be symptomatic. She hadn’t lost weight then and wasn’t falling asleep like she is now. I worry that there is something else going on and it could be treatable. In the past 5 years she’s had 2 bouts of pneumonia and ended up in hospital and the 1st time it turned into sepsis and she nearly died. I bought her an oxometer last year as her breathing is terrible and her oxygen levels were 80 . I said she needs to see a doctor but again she refused. I think her extreme lethargy and breathlessness is to do with her oxygen levels rather than her waldenstroms and if that’s the case maybe they could give her oxygen to take at home. I wish the person that told her these symptoms are waldenstroms had not told her because niw they are set in stone in her mind yet I think they are something else. If there is anybody else out there with waldenstroms are these symptoms of it when blood levels are normal??
Hi @soph094, a warm welcome here, and thank you for posting. I’m so sorry to hear your Mum has been so poorly- I can appreciate that this must be so worrying for you right now. I’ve spoken with one of our Nurse Advisors and you’re quite right that it would be beneficial for your Mum to see a doctor. They will be able to help her to understand the reason for her symptoms- whether they are indeed due to her WM, which is possible, or whether there is another cause that they can treat. They will be able to check her blood tests, her vital signs, and so on. Blood tests can also establish whether your Mum’s WM is stable or if there’s been any change at all that needs treatment, for example.
May I ask when her next haematology outpatient appointment is scheduled for?
We’d encourage you to reach out for support as soon as you can, as the earlier your Mum can be assessed, the better for her as this may prevent her from having to stay in hospital for example. Not to alarm you, but we’d encourage you to call 111/999 if she seems unwell and indeed if her oxygen levels are low.
Our Support Team are here for you if you’d like to talk things over at all, and our contact details and opening hours are all listed here- Blood cancer information and support by phone and email | Blood Cancer UK.
Take good care of yourself and please do keep us updated.
Reading your post bless you
I would be concerned and ringing 111with mum as her oxygen levels are low
I recall when I had covid and sent an oxometer that I had to call 999 if it went below 92
Follow your gut instinct you can’t do the wrong thing protecting mum even if she doesn’t want it
Better safe than sorry
Hi @soph094. This must be a real worry for you. Please keep us updated on how your mum and yourself are doing x
I am very concerned and have been worried for a long time. Her oxygen levels have been like this for approx a year! but she refuses point blank to see a doctor. I literally can’t do anything. She says if she goes into hospital then she’ll never come out
It’s really hard isn’t it because you can’t physically make her. If you called 111 on her behalf and they advised hospital would she listen to them? Would she talk to anybody on the Blood Cancer UK helpline?
She sounds really frightened, as you are x
Awww she is scared underneath it all that she won’t come out of hospital
It’s really hard to change a persons mindset
Would showing her our posts and concern help to encourage her to seek help with you by her side
Her next blood tests are 17th Jan. I asked the nurse last time and the time before to test vit D too as 3 years ago her levels very very low and she should’ve been re tested 3 months later after she started supplementing but they’ve never re checked and its 3 years later. Her oxygen levels have been like this for approx a year! but she refuses point blank to see a doctor. I literally can’t do anything. She says if she goes into hospital then she’ll never come out. I spoke to her today about it again but she’s insistent it’s waldenstroms and she doesn’t need to see a doctor. I’ve read about problems with spleen or kidneys… It could be anything. It could be something completely unrelated. Her anxiety levels are really high too and she hasn’t been out since November 2019 . She has swollen purple ankles too which doctors have seen but never done anything apart from say ooo that’s odd. All I can do is keep saying about seeing a doctor… I can’t force her but it’s hard watching her deteriorate and there’s nothing I can do. The thing is it could be something thats treatable and she could feel a lot better! I just can’t see her seeing the doctor let alone hospital. Bloods are taken at local health centre and that’s bad enough getting her to go there
When she had sepsis and pneumonia her levels dropped to this. That’s why I bought the oxometer because I noticed how noisy and difficult her breathing is. I was shocked when I checked it as like you said it should be 92/93 at absolute minimum but even these levels are abnormal and below this is hospital.
I will talk to her again but I’m pretty such she wouldn’t speak to anyone. It worries me but it also frustrates me because it could be something un related and completely treatable. On the other hand it could be something worse and maybe she just doesn’t want to know. She is 85 now and getting frailer x
She’s very strong willed when she’s makes a decision to do or not to do something… I keep trying but yes maybe if I showed her my post and your replies… Its definately worth trying! Thanks for the suggestion x
Definitely worth a try. Will keep my fingers crossed. Good luck x
Hi @soph094 and a great big welcome and I am so glad you have found us.
We are also here for you and reading your posts I can really sense your ongoing fear, frustration, powerlessness and that you are at your wits end.
Unfortunately your mum, as she is of sound mind, has the right not to seek medical advice and she cannot be forced to do anything against her will.
Also my experience is the more I keep on about something, the more the other person gets entrenched and will not back down.
Your mum might well be fearful as you wrote she said ‘if she goes into hospital then she’ll never come out’.
What you might do is to keep a diary of the symptoms you know about, their length, their severity and impact on her life.
Then at her next medical appointment, if you can go with her and say anything, you have all the data with you.
Obviously you can show her these posts if you wish to.
The most important thing is that you care for and look after yourself as well as you look after your mum.
Please keep posting and look after yourself
Hi @soph094, thank you for sharing, I can hear how difficult a situation this is for you. You’ve been given some great advice by the community here, and I just wanted to mention again that if you’d like to talk things through with someone or just need a listening space for what you’re going through, you’d be so welcome to call our support line (0808 2080 888).
You may well have spoken to your Mum about this option already, but GP surgeries are often able to do home visits for their patients that are unable to leave the house. I thought I’d mention this, just in case it’s useful for you.
I appreciate this has been raised already, but I wonder if it might reassure your Mum to see this- Do I have the right to refuse treatment? - NHS (www.nhs.uk). This talks through consent and a person’s right to accept/refuse treatment.
It’s very understandable to be feeling scared, indeed for both of you. We are all here for you, and please do let us know how you and your Mum get on.
Yes I can’t force her as it is totally her decision. When she has her bloods taken on the 17th it will be with a nurse at the local health centre so no doctor to speak to. Last time we were there I asked if we could actually wait to see a doctor face to face as there was no patients there in the waiting room and they said no yet there were doctors walking around. They said she would have to call and make an appointment for a phone consultation which she finds incredibly hard to near impossible as she can barely hear! I feel like I’m banging my head on a brick wall with everything
Thankyou Tanya for yours and everybody else’s support . I will talk to her about possibly having a home visit although I think the answer will be a firm no as everything completely stresses her out . Maybe she knows there is something else and doesn’t want the greif of tests and hospitals… She is so frail I don’t actually think she would cope with sitting in a hospital waiting for this test or that and there is always the risk of covid or another virus
I have Waldenstrom’s diagnosed in 2017, completed treatment 2018.
I think your last post says it all. It sounds as if your mum is very tired and had enough and I’m sure her anxiety is playing a big part in her refusal to see anyone. Something I’m sure we can all relate to.
I’m not entirely sure that’s correct what your mum was told about Waldenstrom’s, about not having symptoms if her bloods are ok. I belong to the Facebook forum for WMUK and there are people there who do have symptoms of Waldenstrom’s despite having near normal bloods. It’s a very peculiar conditions that has many facets. It’s also rare and there is only a scattering of haematologist that have a good working knowledge of it. WMUK have a website and now have a support phone line.
Regardless of the fact of whether it is Waldenstrom’s or not she should ask to see someone. Has she been discharged from the hospital that treated her?
It seems strange if she has. I know people who have had it for 20 years and are still under a hospital/consultant.
People do get weight loss from Waldenstrom’s but it’s a red flag as are any symptoms and should be reported to her consultant if she has one?
I have always been told they treat the symptoms not the numbers.
I understand how hard it must be for you to see your mum the way she is but you are doing all you can to support her at the end of the day it’s her choice. My thoughts are with you both.
Hi Ann, thanks for your reply. Yes she still has a consultant but we haven’t been into oncology for approx 3 years due to her bloods always being stable. She now has blood drawn at the health centre which is then sent to the hospital and a few weeks later she gets a letter to give her the results. The macmillan nurse then phones her and asks how she is and the last time they called I kept saying to her tell them about the weight loss but she wouldn’t tell them. I actually think she wouldn’t cope if I had to take her into hospital to see a consultant as when we used to go we would have to sit and wait for between 3 or 4 hours even though we would have a specific appointment time. She could just do it a few years back but is so frail now I don’t think she could do it
Hi, i have been diagnosed in oct 2019 with Waldenstroms at age 59, my late father also had this condition. The consultant couldn’t believe it as it is a rare condition and not hereditary. However, although we both had the same symptoms of extreme tiredness, my dad was watch n wait for years n years before treatment. My treatment was a lot more rapid. I had been gradually feeling more n more tired over the course of a year, but it got so bad i went to GP. The first doctor said i had bronchitis as i was always getting chest infections, she gave me an inhaler. 2 weeks later i asked for 2nd opinion, different gp, sent me for bloods. Phone call next day to say paraproteins too high, repeat blood test. Called in to GP 2 days later and immediately referred to Cancer Care Unit at Freeman Hospital, Newcastle. Not what i was expecting. After various blood tests, bone marrow biopsy and scan, i was diagnosed with Waldenstroms. Because my paraproteins were so high i was started on Chemotherapy about 4 weeks later after they had given me other medication to bring levels down, i cant remember exactly everything. I started a 6 month course of Bendamustine and Rituxumab, monthly for 2 days and on the whole tolerated it pretty well. A few side effects but tolerable. After the 2nd treatment i knew it was working. Course finished middle March 2019 and then we went into lockdown. I had so much energy, had a scan at some point and it showed a complete response. I attended hospital for monthly blood checks then eventually 3 monthly. Everything was fine until about a year ago, the tiredness returned, blurry vision, all this getting worse gradually, then heaviness in legs, prone to chest infections, always catching colds, really ill Feb 2022, but never once had covid, enen though husband caught it 3 times. Been jabbed 6 times so well protected. Anyway I kept telling hospital my symptoms but they said my bloods fine. 6 months later i rang them, even tho bloods had been fine, to explain i wasnt well. Got appointment same week and bloods showed paraprotein levels going up again, sent for scan, which revealed lymph nodes had returned in groin and lung area. So disappointed but relieved at last something was being sorted. So I’ve been started on a drug called Zanubrutinib in early November, for life now. Within 2 days I felt like a different person, energised again. Dont feel depressed or lethargic. Had I not persisted then it may hv taken a while to be given this treatment as the scan confirmed my fears. Tell your mum she must contact her gp or the hospital as she must be getting regular bloods taken.
Wow @lellykins25 welcome and what a catalogue of events you have gone through in 3 yrs.
It really showed to me that we know our bodies better than anyone.
Thanks so much for taking the time to type it all.
Take lots of special care of yourself and please keep posting about yourself and how you are doing.