Update on my son

My son also had lymphoma, its very treatable and can be cured , its a blood cancer so it goes everywhere. They need to treat  him straight away if he has aggressive cancer but they need his biopsy results. Stay strong. How old is he?

Hi thank you for replying. My son is 35, his consultant has explained Lymphoma to us & told us his Lymphoma can't be cured but can be treated. How long did it take for your son to have all of his results & be typed & staged ?

Unfortunately, we know my son has had this for at least 7 months.

Good morning Modge and sorry for not getting back to you sooner.

As much as this is so frustrating and very stressful….. the wait caused by inadequate biopsy result’s, the long wait for other results is at times necessary as the accuracy of the diagnosis is ever so important as this is the main tool that triggers the correct treatment that will be most effective.

I think I have said before that staging in Lymphoma is a tool not seen as a prognosis like in sold tumour cancers…. Staging is used to identify where his Lymphoma is presenting, what is the best treatment options (this could involve a few different treatment options used one after the other) and how long treatment will last.

Pathology of Lymphoma is very complicated, in my case I have a rare low grade incurable type and it took over 6 biopsies and a year to get the truth in the pathology but my consultant was 99% sure as to what  had so treatment started….. but with 60 different types of Lymphoma the identification can be hard.

When my condition became aggressive (14 years after my first diagnosis) I endured the same as your son as they had to be totally convinced as to what was going on and this required new biopsies and BMBs and these were all sent for specialist testing…… this took a few months….. and in the meantime I was in a severe state (see my story below) but honestly once the treatment plan was approved (this was done in collaboration with experts in my type) the treatment worked very quickly.

The main challenges is that in many cases they can’t just jump in with the main go-to treatment as it may not be effective enough and as there is a limit as to what the body can take toxic wise it is often best to fight the pain for longer than you would want to get the plan as close to perfect as possible.

Although his Lymphoma is presenting in multiple areas, in Lymphoma it make no real difference. My body was 70% covered in tumours and I also had lump node and bone marrow involvement but the treatment plan did it’s job.

It’s a hard time for you looking on but you have to hold your nerve….. yes easy for me to say I hear you say….. but from my experience it’s fact.

You may want to call the Lymphoma Action helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3. I know the team and they can help reassure you. ((Hugs))

Thank you once again for your reply. We'll wait for as long as it takes to get the right treatment, my worry is his health in the meantime, he's lost 4st in weight & is a bag of bones, the vomiting is daily - episodes 2/3 times a day & the pain is excruciating, even with his meds; I've sat with him day & night this week while he's been in the most awful pain, it's heartbreaking to watch a loved one in so much distress. He has other symptoms too, involving his kidneys & bowel. He has said he can't bear it much longer, this has gradually been going on for over a year now, I think I mentioned before about hospital & GP misdiagnosis & then referral to Haematology last September getting lost. He & his family now have a house close to us to move to (he presently lives 2/3hours away) & is ready to move for support etc but we've been advised to wait until typing & staging is complete, any treatment can be transferred seamlessly we're told so we're sitting in limbo in more ways than 1, he definitely can't hang on for months either physically or mentally. We will speak again to his macmillan nurse specialist.

As for the pain meds you have mentioned there are others and I was on them during the waiting time (I have no recollection what they were) so do keep highlighting the challenges….. l lost 4.5 stone over the two months or so….. it is ever so distressing for everyone….. I spent many hours day and night on my hands and knees on the floor letting the brick sized mass in my neck hang….. in the vain hope that this would help…. I don’t think it did but it kept my mind focused on trying as much as I could.

Being continually sick just drains the bodies energy…… it’s hard watching this but hang in there.

Some if the ‘very’ strong pain meds I got basically knocked me out so my body did get some rest but the things that it made my brain go through was rather challenging…. not recommended if at all possible.

Is he on any steroids?……. this can help at times.

Do call his team and highlight the progression of his symptoms ((hugs))

Hi Modge,

Hope the diagnosis comes through soon and the best treatment started.

Beware the Doc's correct but insensitive phrasing. Did he/she expand on the word Incurable. Lymphomas (60+ types) are manageable. After all the common cold is Incurable.

And if I may I advise you get your info via good sources like Macmillan, Blood Cancer UK, Lymphoma UK and alike.

Dr. Google and nurse Wikipedia spread unnecessary negatives, doom and gloom.

By the way, me Lymphoma in 1984 and still here.

Keep strong

Thank you for your reply. The consultant has told us it's low grade Lymphoma & has explained that whilst this is not curable, it is treatable. I am an ex nurse so only look to reputable sources for information & signposting, I would never rely on a general google search for information. I also have a life limiting condition myself & think your advice is good advice especially for anyone not familiar with 'medical speak'

Thanks Modge for your understanding and tolerance on me "teaching granny how to suck eggs"

With years of explaining to the many unitiated what BC is and its course I too easily lapse into Dr NHLWH mode

They say it's not unusual for patients to know as much if not more about their particular illness than their GP's.

Hopefully, in the nicest possible way you and yours can be just a 'quacky' for a long time into the future