Husband recently diagnosed with NHFL help

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Hello my husband of 10 years (june8th2012) together 14 has been diagnosed with non hodgkin's follicular lymphoma we've been told its incurable and life expectancy is 10 years at best... If he responds to treatment were currently at watch and wait stage and im loosing my mind looking at him every day... 

Were putting things in place... Arrangements for when the time comes, never had life insurance and im trying my best to find a way of explaining to our youngest 2 8 and 7 ive been introducing story books, i read at bedtimes to them so introducing stories in hoping when the time comes they'll go back to this memorable time and it be a comforting memory and a bit easier to understand hoping we sti have years to go, before this even has to happen but then I'm reading peoples comments about being cured and coming to the end of treatment,... And i know this isn't the case  please can anyone help ive not reached out or spoke to anyone we have a great specialist nurse and hematologist consultant who have explained everything to us and yet.... I im not really sure I ve days where things are great and laughing smiling and then other days I can barely look at my girls or oh without crying CryCry

  • Hi again  and well done navigating across to the group.

    The word cancer in any form beings unimaginable crazy thoughts and when you hear a number like ’10 years at best’ these thoughts are made worse so lets take a breath and look at this more.

    As I said in your other post I was diagnosed with a different type of Low Grade - incurable Non Hodgkin’s Lymphoma (NHL). Your husbands Follicular Lymphoma (FL) is another type of Low Grade NHL, yes it is incurable like my type although my type is very rare so this bring treatment challenges. 

    But your husbands FL is the most common type of Low Grade NHL so this means there are lots of treatments available as and when they are required.

    Please don’t get hung up on the number 10. As I said I was diagnosed with my type over 22+ year ago and I am still around living as normal a life that any 66 year old can….. and I have talked with many folks much younger then me with FL who are 20+ years into their journey and still going strong.

    Watch and Wait or as I prefer to call this - Active Monitoring is rather normal for FL and again I have talk with folks who have been at this stage for years with no treatment living a normal life. I was basically on Active Monitoring for 14 years (although I had to have skin treatments - yes very complicated) as sometimes, lymphoma doesn’t need treatment straightaway. Instead active monitoring: regular appointments to check on his lymphoma is done until he needs treatment.

    At this early stage you need to understand the Lymphoma is just NOT like all the other sold tumour cancers like Lung, Kidney, Breast...... I was stage 4 back in 2013 but I am still around doing great and having no treatment.

    The BOLD links above are taken from the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Lymphoma Online Support Groups (Including a groups for Family and Carers Only) and a great Lymphoma Buddy Service where your husband can be linked up with someone who has walked the same treatment journey.

    You will have lots of questions so list them and we will do our best to help you navigate this journey ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi there :) thank you once again we've been signposted to the website I've found alot more information from that website for sure, I've had alot of books from the hospital as well as his different cBroken heartmo options,... Im more positive reading your story as ive only come across 2 hubby is only 43 and they have said is age is on his side as it is uncommon in some one of his age. (no disrespect to youBroken heartelf) I'm not sure if you were around the same age or younger?... But please do see that your words really are a reason for me to have hope... Its been so much of every day hubbys life our life the kBroken hearts life all were ever going to know is this (cancer) not for one second do I want that to come across as a burden as this isn't the case its just been everything being wrapped up into this whole bubbBroken heart of making memories planning making a bucket list our/hubbys consultant told us to leave the hospital and start living our best life i questioned making a bucket list and he agreed fully in not so mBroken hearty words so straight away the tears have started streaming and sort of haven't stopped what feels like ever since Broken heart

  • When my doctor told me four years ago that I had FL, I didn’t blink an eye. I’ve had swollen glands for years and they never bothered me. And my doctor said they do nothing for this condition except keep an eye on it. I had an appointment once a year for bloodwork and an MRI to check node size. Everything was behaving nicely and I was planning on sailing through this c-word diagnosis until a ripe old age.

    The time to start doing something about it is when symptoms arise - night sweats, weight loss, blood work going wonky, etc…. Another time to start doing something about it is when a secondary condition arises. I had/have a secondary condition of lesions that started forming on my femur and pelvis. So, now we treat the FL. I’m currently going through treatment and the doctor says the nodes and the lesions will literally melt away. I have faith. And once all this ‘melting away’ business is done, I plan on changing everything about my lifestyle to stay healthy! Because, yes, they did say this probably will recur. Not if I can help it!!

    Maybe I’m way off base here, but have you considered a second opinion? Not that you need to hear the same diagnosis again, but maybe your current doctor is not right for you? He sounds a bit cold with his dire prognosis. My doctor is AMAZING. Patient. Caring. And ever, EVER so tolerant of me. I am quite the holistic queen and he works around my fears and quirks.

    Prayers to you and your family Pray

  • I was diagnosed on the 10th of May 1999 so I was also 43 at that point and worked full time in a very demanding education job until 2011 when I took early retirement. During these first 12 years I was having regular treatment including being at hospital 3 times a week for 20 weeks at a time...... but kept working and living a normal life, holidays abroad seeing grandchildren come into our lives.

    It took until late 2013 that I had to have full on treatment (You can see my full story if you hit my community name but do remember that I have a rare and difficult to treat type of NHL)...... and although this part of the journey was rather challenging I am over 6 years out from treatment and 5 years in remission and living a great life.

    It is important for me to say and in a way of encouragement that back in 1999 I was told I would never be in any remission that lasted longer then 6 - 9months and this was the case all the way through to 2013........... then in Sep 2016 I was told I was in remission and started my first long term remission in 17 years.

    I do think that it was unfortunate that the consultant gave you the impression that 'doing your bucket list' was imperative. I have been living out my dreams for over 22 years and it's just part of living....... and as a family we are definitely are not looking over our shoulder looking for my condition to 'get me' and time soon.

    I would again highlight the Lymphoma Action regular Regional Lymphoma Online Support Groups (Including a groups for Family and Carers Only) as there is nothing better talking with others on the Lymphoma journey. I do see you have posted in our Carers Group but please remember that a very high percentage of the folks posting in this group are dealing with some very aggressive cancer - Lymphoma is on the whole a different journey.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hello my lovely thank you so so much for your response of all i have spoken with your response has been the most true relatable and exactly the same as were going through I haven't opsnely explained all the details of his diagnosis but the weight loss is one, he had an accident in Nov where he was crushes by a tonne pallet he was rushed to hospital expected to of broke bones when in fact he had none i swear he has a gardeon angel over him but when they did the ct scan they found the mass in his stomach, metatarsal (lining) to which there are several hes had his biopsy to have it confirmed grade and staging confirmed, weight loss and the size of the mass are whats been raised so far as they doubled in size in 2 weeks thank you so so much for all your words I do really appreciate them 

  • Your doctor sounds pessimistic to say the least. The more aggressive lymphomas are curable and it's true that the less aggressive indolent lymphomas like follicular are not curable but they are eminently treatable. If necessary they can be treated over and over again. Some people get years and years between treatments. I have a friend who had one lot of treatment 30 years ago and it has never recurred. Me, I had the first signs of lymphoma in 2014 although not diagnosed until 2017. I'm now in remission. So forget about 10 years and enjoy your lives.

  • Thank you very much i appreciate that it means alot 

  • Hi Dd 1987 I am a 47 year old female with 3 young children like yourself, I was diagnosed with Follicular lymphoma (stage 4) in December, I am currently receiving receiving treatment(chemotherapy) I agree with Mike I think we can be all consumed with stastics and they differ from various sites we access, me personally I am looking to the positives in that yes it is not curable but is a 100% treatable, like Mike has highlighted people with this diagnosis go on to lead relatively normal healthy lives for many many years and if and when FL does progress there is treatment available and can be managed well.

    Mike has given some great advise in signposting you to the relevant support groups it would be good for you and your family to share this journey my with others in a similar position

    I wish you anfmd your family all the very best x

  • I was diagnosed with FL in August 2020 (at 53), I finished my chemo in Feb 2021 and was confirmed in remission in March 2021, so I will be coming up to my first year in remission. My consultant is very good and stated early on that though I have something that is currently incurable, it is treatable, he also has patients who have been in remission for over 20 years.

    It's easy to get hooked on the incurable aspect but FL responds very well to chemo and a bit like my own situation, his FL was almost discovered by accident so up until then wasn't causing him problems.

    It takes time to get over this, I'm still working through it myself and the pandemic hasn't helped.

    All the best

    MAC

  • DD1987 – I’m sorry to read about the stress your husband’s situation has brought you. The registrar who gave me my diagnosis said “It may not be any consolation but, if I had to choose a cancer to have, it would be this one. Because although not curable, it’s eminently treatable”. Unless there's something special about your husband's case, do try to bear that in mind.

    I’m surprised that they should have raised the  life expectancy question. Highlander is right to emphasise real caution in interpreting the published life expectancy figures. The thing is that they’re agglomerated figures and have little meaning at an individual level. If you look at sources such as Cancer Research, you find all sorts of figures for 1, 5, 10 and beyond, but these depend on so many factors.

    I write from the experience of having been diagnosed in May 2012 with follicular lymphoma, following a biopsy - which in turn followed me asking my GP about a lump in my groin (no sniggering at the back, there!). For nearly ten years, I had a regular (six monthly) “watch and wait” check-up, until early this year when it became clear that the follicular lymphoma had transformed into Diffuse large B-cell Lymphoma and needed sorting out. The consultant recommended chemotherapy - six cycles of R-CHOP followed by targetted radiotherapy on the shoulder location. So far, I’ve had 3; the fourth is next Thursday. I did have secondary infections after the first two, which wasn’t the most fun I’ve ever had, but this time, with a prophylactic antibiotic, no infections.

    One thing that you might want to consider is specialist counselling. Here in Sheffield, we have a very fine organisation called Cavendish Cancer Care, which offers complimentary cancer treatments, including counselling. You might want to see if such options are available in your area. I found it invaluable at the early stages of my diagnosis. (their website, at https://cavcare.org.uk/, should give you some ideas about options).

    As you have read here, many people live well and long after diagnosis and treatment of NHL. While you and your husband are probably right to tidy up your future family provisions, please don’t don’t let the cancer diagnosis rule your life. As long as he’s on “watch and wait” and feeling fine, get on with enjoying life.