Hi, my husband (38) has recently been diagnosed with PRV blood cancer. We booked a spa previous to his diagnosis. Is he able to go into hot tubs? I’ve also heard massage might not be safe? Please help, we’ve had conflicting into from his two consultations.
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Hi @Mimi1.
Have you got a clinical nurse you could ask for advice? I have also copied in the @BloodCancerUK_Nurses to see if they can help.
How are you both doing?
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Hi @Mimi1 welcome to the forum.
A very good question and I won’t repeat @Nichola75 brilliant response.
I think that you say it all in your last sentence, providing both consultants know your husbands whole medical history, sometimes even experts have different opinions.
Sometimes people ask the spa whether your husband would be accepted with his diagnosis and also treatment if he is currently on any .
This is a purely personal reply, and I have another blood cancer, but I have a weakened immune system so my concerns would be catching any germs, infections, bugs getting into open wounds etc.
Look after yourselves and please do keep posting and let us know if you get a definite answer.
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Hi thank you so much. He has spoken to two nurses and both gave opposite answers. I thought hot tubs might be an issue but I never thought massages would be. His muscles are very achy and it just seems so unfair not to be able to have a massage?
We’re ok. Trying to stay positive. A whole bunch of emotions since the diagnosis. Anger, guilt, sadness. The only thing we can do is move forward.
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Hi @Mimi1 perhaps give yourselves time, those emotions seem natural to me, you have both had a great shock.
I think I went through life on autopilot with my life mapped out in front of me before diagnosis and suddenly my mind is going through the ‘what if’s’ and how will we cope etc
I came home and wrote my will and funeral music.
I have another blood cancer and that was 20 yrs ago.
I attach the Blood Cancer UK website details on being just diagnosed.
I’ve just been told I have blood cancer | Blood Cancer UK
Be very kind to yourselves and please do keep posting
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Many spas are hesitant to provide treatments without a doctor’s approval. Even six years after treatment, I still struggle to find spas that will treat me without a note from my consultant.
There’s a lot of conflicting information online about the safety of lymphatic drainage massage after treatment. Some sources advise against moving lymph fluid, while others claim there’s no evidence to support this concern. Ultimately, the decision is yours and should be based on what benefits your husband the most.
In my case, my spa offers facials (avoiding the neck area) but not massages. This might be because I haven’t achieved remission yet.
I would always :
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consult your doctor before seeking any treatment, including lymphatic drainage massage.
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a good spa should require a doctor’s note for treatment after medical procedures.
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I do now enjoy pools, steam rooms, and saunas since my treatment ended a long while back and my immune system is healthier. However, I like everyone else has already said it’s important to check with your doctor first, especially if your husbands’ immune system is compromised. These environments can carry a higher risk of infection.
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Have a look to see if your local hospice provides any complimentary therapies
Reflexology is lovely and relaxing
Reiki is another
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Hi! Thank you for this. How can I find if a local hospice offers this please?
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Hi @Mimi1 either look on the hospices website or ring them up.
But perhaps still get a medical opinion first
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Dear @Mimi1,
I am sorry to read you are having some conflicting information. Unfortunately we would advise that you chat to the treatment team as they are the experts in your husbands case and they really need to be the ones to offer the best advise.
We would be more than happy to help you explore options in your local area, please do reach out either on the phone or via our email and we can see what we can find for you. I have attached our contact details here: Blood cancer information and support by phone and email | Blood Cancer UK
Please do know you are not on your own with how you are feeling, one day at a time and be kind to yourselves, you have had a lot of information to absorb.
Best wishes,
Heidi J (Support Services Nurse)
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the Waldenström macroglobulinaemia (WM) group just offered a webinar on lymphatic massage purely for Waldenström macroglobulinaemia (WM) sufferers, so I can’t see why it would be dangerous
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Hey there @Androcles, I believe @Mimi1 was asking about massage in relation to Polycythaemia vera (PV) which is a different blood disorder to Waldenström macroglobulinaemia (WM) with different side effects and reactions to complementary therapies. And of course we all have individual treatments depending on where we are with our respective blood cancers.
With Polycythaemia vera (PV) for example, warm/hot water can bring on or worsen uncomfortable skin sensations. We can also have sensitive lymphatic systems which may not benefit from certain kinds of massage.
Always worth checking these types of treatments out with our specialists I’d say, although now I fancy a massage!
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Like most I’m a patient not a Haemotologist but my immediate thought is 'blood clots and their movement '.
I’m in the Waldenström macroglobulinaemia (WM) Clan and increased paraprotein amongst other things thickens the blood viscosity.
My current numbers are in remission but even then I’d want reassurance.
Each case needs care, for me my paraprotein levels are OK but the fluid around my heart (pericardial effusion), caused by treatment, is not.
Types of massage are out there, from a gentle rub down to a deep swedish, so who knows may be something for all, but take care.
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Hello, @Mimi1! I’m very sorry to hear about your husband’s recent diagnosis. I have also been recently diagnosed with Polycythaemia vera (PV) and massage is something that I had wondered about, too, so I have been interested to see what others here have had to say while I was waiting to see my haematologist to ask her about it.
My physiotherapist is actually a sports medicine expert (although you would have to go a very long way to find anyone less sporty than me, believe me!) and all his appointments are for two hours - the first hour with him and the second hour with one of his lymphatic drainage massage therapists. I talked to him about Polycythaemia vera (PV) and lymphatic drainage massage and although he is by nature someone who always errs very much on the side of caution, he talked me through the physiological and massage aspects of it and I was happy to have the massage with gentle pressure from the waist down. Then last week I saw my haematologist and she talked me through the haematology and oncology aspects of it and said that there was absolutely no reason not to have lymphatic drainage massage, as long as it was done by someone properly trained, as long as I felt comfortable with it and as long as the pressure used wasn’t too heavy. On Monday I saw my cardiologist and we talked about massage to open up (‘free up’) the chest area and she said very much the same thing.
That said, as almost everyone who has posted above has said, you need to be led by your husband’s specialist. I wish your husband well.
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Hi Janet, thank you so much for your thoughtful reply. As far as I can tell gentle pressure seems to be no issue. The problem we’re having is that he has a lot of muscular pain which is very much relieved by heavy pressure. He ended up having a couple of massages since, they were deep tissue, and no issues. I’m just not really understanding the risks of deep tissue ans Polycythaemia vera (PV) and of course I want to make sure he’s ok.
I’m hoping he can continue to get them. We have unfortunately had a very bad experience with his recent specialist, so we don’t really know where to turn. Different specialists are saying different things. Ugh.
Thanks again.
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Hi @Mimi1 I have found different specialists sometimes do say different things.
It is like a court case where the prosecutors and defendants both have expert witnesses to try and prove their cases.
Perhaps give the Blood Cancer UK support line a call on 0808 2080 888 to talk it through, they cannot give a medical opinion but they may be able to help with your options.
Look after yourselves and please do let us know how you are both getting on
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Hi, Mimi1! I’m sorry your husband is having such a difficult time, both with the muscular pain and with his specialist. I would agree with Erica that it would be worth calling the Blood Cancer UK support line to talk it all through and, depending on where you live and how things are organised in your area, might it be possible for your husband to be switched to another specialist? They need to be able to work together.
Wishing you and your huband all the best,
Janet
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