I'm looking for some advice on post treatment and perimenopause. I am 49 years old and had Cladribine last January 2020. Whilst recovering at home and them shielding for almost 14 months, I have now returned back to work on a phased return. My recent blood counts taken in early March were good, apart from my Lymphocytes which were still below normal level, but my consultant is not concerned and said it's common for these to fluctuate. I'm confused with some symptoms I've been suffering with over the last 6 months and am wondering if these could be perimenopausal symptoms rather than Leukaemia symptoms. Tiredness, fatigue, lack of concentration, hot sweats, dry mouth, aches and pains, headaches, bloating, lack of energy, vaginal dryness, insomnia, irritable, moody, weight gain.
I'm panicking thinking some of these symptoms I suffered with prior to my Hairy Cell Leukaemia diagnosis, but I've read some cancer treatments can bring on the menopause.
Has anybody suffered with the same and can give me any advice?
Written by
TM1972
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Hi and I'm wondering if you're on the right forum. Do Hairy Cell Leukemia patients join this CLL forum? I have no idea, but want to reach out to you.
Symptoms you've described could be due to many things, but sure, they could be menopause knocking on the door. Only way to find out would be to consult a Gynaecologist very experienced in menopause.. and not all are. Seems to me, that if you have an involved Leukemia consultant he/she would be open to the suggestion of referring you to a specialist who'd listen to you, examine you and get tests done that could answer your question. Your Leukemia should want to know if your symptoms were completely nothing to do with his treatment. Of course if you have a very good GP they might make the referral..
I'm assuming you want treatment on the NHS. If you can go privately you'd see someone quicker. But costs mount up with tests. If insured your insurer may not cover.
If you are beginning the menopause and HRT is offered, don't automatically be put off by the scares of that huge trial years ago in the US. (1). It was faulty and (2). There are safer treatments it did not cover. Take up to date medical opinion in and weigh up everything. But you can't make any decisions without knowing what's causing your symptoms.
I think you are in the UK. If you'd say so on your profile, you might get more answers.
I've heard that a couple weeks ago Davina McCall did a chanel 4 documentary on the menopause. I did not see it but may download it from ALL FOUR before it dissapears in two weeks. However, you must only be guided by good medical advice and in the UK best to see a Gyny who is attached to a good research hospital.
Take care, if the symptoms you describe, except generally the bloating, are Menapausal and you're not sleeping well, you'll really have to push yourself to sort this out because it will take a lot of determination but you'll not be feeling able to be pushy. I hope you can make yourself sort this... it will be worth it. Good luck.
Hi BlueMts the Leukaemia Care forum is for those affected by a blood cancer diagnosis. So all types of leukaemia patients are supported here. Thank you for your post and support.BW
Hi TM1972 thank you for posting. Good to read the leukaemia has responded to treatment blood counts are good and you have started a phased return to work. Sorry to learn of your symptoms. I see you have had some good information from @BluMts, to seek a referral from either your consultant or GP , If you wish to chat to someone our Nurse Advisors are available every weekday on our free helpline. You can speak to a nurse at the following times:
Monday – 9am – 5pm
Tuesday – 9:15am – 2:15pm
Wednesday – 9:15am – 2:15pm
Thursday – 9:15am – 2:15pm and 7pm – 10pm
Friday – 7pm – 10pm
Simply call our helpline on 08088 010 444, or email support@leukaemiacare.org.uk to book a time slot to speak with a nurse. Leukaemia Care article with further contacts leukaemiacare.org.uk/suppor...
Hi - I'm 53 and got diagnosed with HCL when I was 45 and had cladribine. I thought I had peri menopause symptoms before I got diagnosed with HCL so can understand your confusion. E.g. night sweats - never occurred to me I had HCL. However my bloods have been fine too (lymphocytes took ages to come back up) and I can safely say I've ticked all the perimenopause symptoms! I tried HRT for a bit - worked wonders for most things but not my migraines so I stopped after a year. My symptoms have lessened now I'm a year without periods. In my experience, I think you'd be very lucky to have a GP who understands menopause let alone HCL. I love our GP service but I don't expect them to know everything. I do 6 monthly bloods for my haematologist and they've been fine so I trust that my HCL is fine.
I started practising yoga about 6 months ago and that has helped me in lots of ways. I am part of an online subscription service and there are lots of classes suitable for whenever you're tired or feeling stronger. You don't have to be super flexible or energetic but it does help me feel better.
I also take magnesium glycinate (recommended by migraine consultant) which helps migraines and menopause.
I'm not sure if I've helped but I really do understand your situation and worries. I would rely on your HCL consultant, make sure that's ok and then look at support for perimenopause.
Hi, I think you are asking a very difficult question as the symptoms you describe could be common for either condition.Perhaps this is a question for your medical team.
That is why initial diagnosis of either condition can take time.
Thanks for posting it was a good idea.
Take care the symptoms you describe can be debilitating. Look after yourself.
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