Dad diagnosed on Monday

Hi and welcome to the site, sorry to read about your dad's recent diagnosis and your recent loss of your mum, have they told you if your dad has a slow growing type of mantle cell or one of the more active types, as slow growing can be left untreated for many years, where as the "aggressive" types are treated. If you can let us know we can be more specific with our advice and support.

John  

We think it's a bit more aggressive because his bloods showed an increase his lymphocytes in two weeks and the consultant said that although it wasn't aggressive at the moment, it also wasn't a slow growing...somewhere was between the two, and spoke about potential treatments.

Outwardly, he has no lumps in his lymphs, and we don't have a CT scan date yet. As you can imagine, we are all navigating the shock of this news after such a tough previous nine months with mum. 

Hi again, yes some types do fall between the two common presentations and 12+ years ago MCL was always treated, since then they understanding of all types of lymphoma has improved and at the same time new treatments have come along that have made a big difference and that's the case with MCL. 

The scan will likely inform what treatment he has, have a read of this https://lymphoma-action.org.uk/types-lymphoma-non-hodgkin-lymphoma/mantle-cell-lymphoma and the is more information about lymphoma on the site as well as on this site too.

The is a lot to absorb and understand, first blood cancers are not like solid tumour cancers and staging is not as serious, its used to inform the treatment plan. his MCL may show up in several sites in his body and again don't see that as worrying as the treatment is given to his blood and it goes everywhere, so hits all the sites where the disease is showing up. I had a different type diffused large B cell (DLBC) back in 2009 and was stage 4b and had a large mass in my abdomen and multiple sites in my small intestine, so because it was not presenting in a lymph node was classed as extra nodal.

The are a number of treatment options for your dad, so discuss them with the consultant and ask why they are recommending a particular one. Set up a note book and write down all the questions you have as you think of them, that way you don't forget to ask them. Your dad will be given contact details for a specialist nurse, they are there to help and support you all through this.

You may also want to talk to your dad about him giving the consultant permission to discuss his case with you when dad is not there if that may be helpful, especial in the current Covid issues.

Any questions just ask, here to help as are others like Mike The Highlander who is a community champion and he will pop by and say hi at some point.

john

Thank you so much for your response.

Your words are very reassuring and have helped to elivate the worst of our immediate sense of panic. My sisters and brother have seen the site and your words too. I will encourage our dad to join the group himself, but he's not there yet. 

Here to help where I can as and when you need it, also have a look at how your family can access support either here at macmillan or at the smaller specialist charity lymphoma action, as they have different types of support to those offered by macmillan. 

https://lymphoma-action.org.uk/support-you

1. Hi I'm new to the group and just saw your chat. I'm so sorry to hear what's happened to your family. My dad was diagnosed with Mantal Cell Lymphoma on Wednesday this week. Although he's 87 he's fit and healthy and this has come as a massive shock. I'm trying to get my head around it. I don't know how bad he is but he's got the sweats but is feeling OK with no other symptoms. The letter he received said no B symptoms. Is this a, waiting game now? If any one could give me any advice as I really don't know what to expect with this as apparently it can come and go. I feel like I've been hit by a bus. Brave face to my dad, but heart is breaking underneath. 

Hi there. Like you  I found it all a bit overwhelming at first. Please don’t panic . My limited understanding is that some Lymphomas are watch and wait, . Please talk to your Dads Consultant or specialist nurse, My Macmillan nurse is so knowledgeable. They will put everything in perspective for you  . Although this condition is not considered curable when in remission you can live some years. 
My journey of treatment has just started , please tell your Dad if he needs it too it really isn’t that bad. . I am no spring chicken either at 73 and I know my son worries about that’s. All I can say again is don’t panic . It will all become clear soon . 
best wishes

I am truly grateful for your reply,thank-you so much. I will get in touch with my dads consultant or try and talk to a specialist nurse.

The main issue with my dad is his mindset. He says he doesn't   want treatments that will make him feel really ill and as long as he feels ok he says to leave him be.This is a really difficulty for me to let him be , but he says at 87 he's had a good life and all that. Me, I just want him to stay around for a lot longer. I obviously dont want him to be in any pain but I don't want him to throw the towel in,so to speak. I respect his wishes but also trying not to be selfish.

Your Dad's reticence is another good reason to have on board a specialist nurse. They will talk to him and you. You may well find he then sees things differently. 

Best wishes

Hi Celtic girl, you may well need your dad's permission to be given before any of the team treating him will discuss his medical condition, so you may want to ask him if he will give it so you can understand better his disease and what the future holds.

As Kaygal has mention some lymphoma's are slow growing and that can be the case for mantle cell, therefore depending on how fast its growing will depend on whether treatment is needed now. As for no B symptoms and night sweats, if it is drenching night sweats he experiences then he does have B symptoms, though at the end of the day it does not change the treatment plan.

As for having treatment I have known a few people over 80 and one was an 85 yr old who had RCHOP and had 6 rounds, treatment can cause fatigue and for some it is challenging, its not as bad as everyone thinks. The are also specialist drugs like Ibrutinib that can be given and its less toxic than chemo. The best advice I can offer is to ensure your dad has all the facts and is able to make an informed decision, even if its not the decision you want and as hard as it will be, people should respect his decision. We all want our parents and family around for ever and it is hard when we realise that is not possible, so may be its time to sit down and have some discussions if that's not been done already. 

Hope you can work this out and have the discussions

John