Partner just been diagnosed with Mantle lymphoma

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Hi my partner has just been diagnosed with Mantle lymphoma. We had never heard of this before she has it in her groin and having further tests to see in if brain or bone marrow..so the CT scan did not show anywhere else ..we are both terrified and dont know much else at this stage whether it is stage 1 or more until she has the PET and MRI scan ..just wondering if anyone else is going through this and advice etc ..many thanks

Thehighlander over 4 years ago

Hi Gloria1 and welcome to this corner of the Macmillan Community but sorry to see you finding us.

A blood cancer diagnosis will have come as a shock and yes terrifying. But once you get to know more about blood cancer you will see it in a different light as it is totally different from other types of solid tumour cancers.

There are over 60 types of Lymphoma so getting the exact type is very important. Further tests will double check her type and her stage. Mantle Cell can present as Aggressive or Slow growing so all this information needs to be found.

Although I had a different type of Non Hodgkin’s Lymphoma I was diagnosed back in 1999 and eventually stage 4, but this made no real difference to the outcome and I am still around doing great.

Stage numbers are mainly used to pinpoint the type of treatment and for how long..... blood cancer is very treatable with great results.

The link below will take you to some info about Mantle Cell.

Always around to help out and answer questions.

lymphoma-action.org.uk/.../mantle-cell-lymphoma

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

Anniemcn over 4 years ago

Hi,

I was diagnosed with MCL in Jan/Feb. I have it in groin, abdomen, armpits, neck and bone marrow.

Yes it is very frightening when diagnosed. First thing I would say is do not Google Mantle Cell. Most info online is out of date and inaccurate. In fact, I'd say read very little just now.

I have been on what's called Watch and Wait with my lymphoma being described as indolent or slow growing. I get my bloods done each month until such times as my doc says its time to start treatment. I am actually starting next week.

I have spoken to my doctor and another MCL specialist and am happy with the treatment planned and feeling really positive.

There are lots of new protocols and drugs out there for MCL and lots of research trials etc.

I have to admit it took some time for me to get some of the stuff I read online out of my head.. It is not helpful. Maybe later down the line, read what your doctor recommends but stay off the net.

All the best

Annie

Gloria1 over 4 years ago in reply to Anniemcn

Hi Annie.. many thanks for your reply and your very right not to google . I did this and it’s very scary ..I hope your treatment goes very well and best of luck to you

thanks again

Gloria1 over 4 years ago in reply to Thehighlander

Hi many thanks for replying ..yes it’s such a scary time but trying to stay positive and that’s fantastic news about yourself and I’m trying to stay positive

Cookieboy over 4 years ago

Hi Gloria1

Sorry to hear your news but as Anniemcn says, be careful what you read, it can lead you down the wrong path as far as information is concerned. I was diagnosed with MCL 10 years ago and Ive been on Watch and Wait ever since. The key is to stay positive and the people at macMillan are amazing, a great group who will support you and your partner on this MCL journey.

Best wishes to you both

Gloria1 over 4 years ago in reply to Cookieboy

Hi thanks for your message ..we get results next week from other scans mri etc ..I have been googling a lot and it seems so grim. Your message has really given us hope..

thanks again

Thehighlander over 4 years ago in reply to Gloria1

Gloria1 you do need to watch what you read as some Google hits will take you to information that is way out of date and frankly not helpful.

As I said before I have a different type of NHL, diagnosed back in 1999 and eventually stage 4.

In 1999 I was told incurable but treatable but will never see remission...... 17 years on I was told I was in remission.

The treatment development and effectiveness of treatment has moved on so much.

Stay away from Google, better talking with people who have walked the walk.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

FormerMember over 4 years ago in reply to Thehighlander

I was diagnosed with MCL in March this year. I'm lucky, mine is indolent so far, and apart from a lump in my neck, I wouldn't know anything was wrong. I'm on active monitoring (or watch and wait!) with 3 monthly consultant reviews. It is scary, that's for sure, and like most with a new diagnosis, Dr Google was quite upsetting. My wife and I have now decided that what will be will be, and there's no point at all being scared or worried about something that's not happened yet. I feel well, so we live life to the full while we can. And if and when things change, we deal with it then.

I'm 62, otherwise fit and healthy, and yes, to be sure it's not a diagnosis that anyone would welcome. Good to read Cookieboy that he's been on watch and wait for 10 years.

Thanks for the supportive words that people post here - you never know who reads them but trust me, every good news story brings hope to many.

53Jan over 4 years ago

My husband was diagnosed in May as having indolent MCL and put on watch & wait. He has regular checks & having a bone marrow biopsy this week. If you need to read positive articles online I suggest you watch Prof Simon Rule of Plymouth hospital who specialises in MCL. He is so positive and proof that treatments are out there and research ongoing. Stay positive.

53Jan

FormerMember over 3 years ago

hi,
I hope you are making good progress by now but there seems to be a lack of mantle cell survivor comment here and therefore, I thought I would add my own story in the hope that it will help you or someone else.
At the beginning of 2016, I was in my late 50s and had been having digestive problems, thought to be Crohns disease. However, an endoscopy confirmed that it was mantle cell lymphoma instead and further investigation showed it was already in my bone marrow. I was put on a watch and wait scenario and enjoyed myself for the next eight months before all my lymph nodes rapidly enlarged and I started to lose weight. There was some debate as to whether I should join a trial comparing R-Chop and Rituximab with ibrutinib but as I was otherwise fit and active, my consultant advised me to have an autologous stem cell transplant (using my own “cleaned up” cells).
I was started on several cycles of Cytarabine straight away, to shrink the tumours, before my own stem cells were harvested. I had no adverse reaction to the chemotherapy, apart from tiredness which quickly passed. After several months of conditioning treatment, I was admitted to a specialist unit where I had BEAM chemotherapy followed by the transplant. At that point, I had no immune system and felt ghastly, but every day I was getting a little better; I went home after three weeks and made steady progress from there on. I had regular blood tests, check ups and doses of Rituximab and three extra years of this wonderful life that would not have happened for me otherwise.
Unfortunately, my lymphoma made a surprise reappearance last August and I spent two weeks in hospital trying various treatments to get the tumours under control. Ibrutinib proved a miracle drug for me and I’m now well enough to be preparing for an allogeneic stem cell transplant (using donor cells).
It has been an interesting journey so far, the hospital staff have all been amazingly kind, helpful and understanding. Treatments are improving all the time; they’ve occasionally been challenging to deal with, but I’ve already lived 4 years longer than I would otherwise have done, so I have no complaints.
My advice is to stay as fit and healthy as you can; exercise regularly within your own limits, eat well and sensibly even when you don’t feel like it and enjoy every day you are given.

“The past is history, the future’s a mystery, today is a gift and that's why it’s called the present.”

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