Follicular b-cell non-Hodgkin Lymphoma

Hi Michelle0811 and a warm welcome to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Follicular Lymphoma (FL) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Like my first type of NHL your Follicular Lymphoma is one of a number of slow growing Low-grade non-Hodgkin lymphomas……. 

FL is the most come low-grade NHL and with this comes the availability of a number of treatment routes as and when required……. Unlike my 2 rare types of T-Cell.

Michelle0811 said:

After having a PET scan and MDT meeting I had my second appointment with the same Consultant. At this meeting they had decided I needed to have radiotherapy every day for a few weeks. We were shocked because we didn’t understand why they had gone straight to radiotherapy. 

Your consultant used the word ‘probably’…… but in Lymphomas until all the parts of the jigsaw is put on the MDT table (this includes your PET) where the collective minds in the multidisciplinary team will review, agree and recommend a way forward.

This is based on the best application of treatment for how you FL is presenting and the treatment proposed is being used at most effectively.

I appreciate your concern but of all the treatment available (I had had a lot of the Pick and Mix over my 24+ years) Radiotherapy is at the lower end of treatment effects lust.

Over my main 2 years treatment (late 2013 to late 2015) I had a total of 45 zaps of radiotherapy (5, 10 then 30)

The 10 zaps were on every Lymph-Node in my body….. obviously on both side of my neck….. initially the process is rather intense, especially all the planning and setting up……. but it was a do-able and my main effects was fatigue but that was more to do with the regular hospital visits, dry skin and a few mouth ulcers…. But I was given all the necessary products to over come these.

I did have to have face and body moulds made and used to stop me moving during treatment….. these were ok….. the initial mind games had to be controlled……. but the treatment itself lasted from a few seconds to a few minutes.

You will have to have a long discussion with the radiotherapy team with regards to your mobility and to what your limits are to be positioned on the treatment table……. 

I have Thoratic & Lumber Spondylosis - Spinal Osteoarthritis……. so laying flat for a long time especially during the setting up and planning was very challenging……. But I was fine with the treatments.

I have said enough but do come back with your questions……. To encourage you….  I am now 8.5 years out from my last treatment, I turn 70 at the end of this year and I am living a great life ((hugs))

Wow, first of all people keep telling me I’m a warrior because of all the things I’ve had thrown at me, but you truly are a warrior and first of all you should be extremely proud of yourself. First for getting through all of that and second, for helping people like me. Thank you. I appreciate you already. 
I think it is the making of the mask that I might find challenging just because of laying still while they make it. I silently cry while having MRIs! All I can do is take my oramorph and hope for the best. A positive is I’m not claustrophobic but I do have a fear of not being to breathe so that might give me a bit of anxiety. 
when I was 24 I had a gum disease which meant I had to have all of my teeth removed (they saved the front lower 6! Yay! So my worry is not being able to wear them if I get sores as if I even get a rawberry seed underneath, it’s agony  and my husband of 28 years has never seen me without them. He said it won’t matter as long as it kills it or reduces it. I am going to the dentist today so that she can make sure everything is healthy as I go on the 13th for my first appointment. 
I too have been extremely unlucky in that my cancer is rare because it started in a lymph node in my parotid gland but then am I because the only reason I felt this hard lump was because I usee cream every day so if it had been anywhere  else I would not have found it ‍♀️. 
I cannot thank you enough for replying. 
Much love

Michelle 

You have made me giggle a little lol.

The making of the mask does not take that long….. have a look for a YouTube video of the process.

It’s the setting up that can take time and this has to be done with you in position and mask on…… I just took pain meds before each treatment.

My first 5 zaps were on a tennis ball sized tumour on my forehead and it had actually attached on to my eye lid closing my eye.

I was told it was 50/50 that my right eye could be damaged but I did the 'Man in the Lead Mask" thing, had 5 sessions of Radiotherapy and bang it was gone in 5 weeks leaving a little indentation on my forehead..... I did not get to keep that mask as it would have sold for a good scap price ;) but these my 2 other bad boys……

You can see my full story in this link (See my story)

This group is helpful but is often not that busy but I am always here….

You may want to check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment. (I also volunteer with LA)

They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.

They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

((hugs))

Wow, I can’t believe they wouldn’t let you weight it in for Scrap! How rude  On the plus side, you clearly didn’t go blind!

Ok so normally my typing is pretty good but what is a rawberry seed - it put a face in replacement for st. ‍♀️ what the heck. I wrote the word saint and it came up with a female. I give up ‍♀️ 

I do mask a lot of my fear with humour because if I’m not laughing at myself I’m crying! I do a lot of paintings for friends (as gifts) and I do push myself but I just think it’s fear of the unknown.  

The consultant did say that it might not be curable and when i asked if I could have the lymph node removed he said that wouldn’t work. When I think how violent the 3rd biopsy was I wouldn’t be surprised when he said you might have cells that can escape. Now this is my logical brain kicking in but they found suspected lymphoma on the second FNA and then was confirmed by the core biopsies, now in my eyes, when the 18 guage needle came out twice (he burst the main blood vessel in my face and couldn’t stop the bleeding and then had to push so hard to get the needle into the lymph node, he pressed on my facial nerve so hard that my right eye stopped closing ) would you have thought that cancer cells would have escaped from the holes left in the lymph node and are now having a holiday somewhere else in my body! Maybe that is why they say they might not be able to cure it fully.  No S*** Sherlock! 

I had better go and get ready for the dentist now (it only takes me two hours after taking my oramorph)  if ever I can help you in any way, please feel free to offload.  I am a good listener.

Thank you again, you don’t realise how much lighter I feel as you are the first person I’ve spoken to about my diagnosis so thank you. ️ 

Michelle 

ps I’ll let you know once my mask has been made!

Ps I have just seen the start of your story but I’d like to give myself enough time to read it properly and so I will let you know once I have. One thing I need to do is apologise because I did not know to the extent of what you have gone through. I think The Highlander is the most appropriate name you could have given yourself because it is the name of a true Warrior and you should be so proud of all that you have overcome. 

I only got to the part of you giving up work but I’d like to read all of your story carefully. 

Warm regards

michelle 

Sounds a dreadful experience…..

You will see from my story that it took a full year and 6 biopsies to pinpoint my first rare CTCL….

You just can’t cut out Lymphoma although if there is risk to life they would operate…. Lymphoma can go anywhere in the body but teds to find a friend and set up house for others to join.

Like my first NHL your Follicular Lymphoma is seen as a life long chronic health condition that will be treated as and when required.

The main difference between other chronic illnesses say like diabetes, this has to be monitored every day and if things go wrong they go wrong quickly……. our low-grade NHLs are just not like that.

I am sure we will talk again ((hugs))

Hi Mike,

Im sorry, I was logged out and have lost your last message. 

I was officially diagnosed on the 25th of April and told I would need radiotherapy every day for a few weeks. This had gone from the “watch and wait” appointment just two weeks earlier after my core biopsy results so I was and still am a little confused. 

I got for my appointment on the 13th so of course will let you know. 

Thank you so much again,

Michelle 

Hi Mike,

Your message has reappeared. 

I’m not sure if you can help me with this but for a few months I have been suffering with shortness of breath. It just starts at any time, sitting down talking, walking a few steps and even just whe I’m painting. I was wondering if you could help me. My face has also become quite round and shiny and has even turned brown and my face never tans. Maybe I’m overthinking things but it’s like wheI need steroids for my asthma (I have rescue meds - steroids and antibiotics that I have at home in case of chest infections as I had a stint in intensive care for a big asthma attack) I start withhe “moon face” I’m not sure why these emojis are appearing when I haven’t put them in (shrugging shoulders emojis lol). I daren’t even put anymore in. they’re are just substituting random letters (laughing face emoji!)

Many thanks

Michelle 

Hi Michelle, the random appearance of emojis can happen….. you can go and delete them….. and once you put a post live and you see a mistake you can go back and edit a post - click on MORE at the bottom and the edit tool will come up.

One of the breathlessness causes can be Low red blood cell count, also known as anemia…… and this reduces the amount of cells to carry oxygen to the body’s tissues including the lungs resulting in symptoms like fatigue, weakness, and shortness of breath.

I am asthmatic and once I was diagnosed my asthma was worse.

In general your general immune system and often general heath can be impaired due to your busy immune system fighting on 2 fronts….. fighting all the general infections and bugs on one hand…… and 24/7 fighting your MZL

I suppose it doesn’t help that I have hardly any thyroid left. I’ve had an underactive thyroid for nearly 20 years and on of the radiologists asked me if I had ever been diagnosed with Hashimoto’s. I literally have no immune system so I suppose this would make sense. Honestly I’ve been through the mill a little but I try to stay positive. Sometimes it’s just really difficult. 
It totally makes sense with the red blood cells as these were low but not picked up on and was just told by the haematology consultant that Lymphoma and shortness of breath weren’t related ‍♀️

fortunately I have been referred to a consultant in Leeds who’s interest is in lymphoma. Fingers crossed he’ll have more more answers. 

many thanks - again!

Michelle