Newly diagnosed with NHL

Hi Destiny and welcome to our exclusive club though sorry you find the need to join. Have they told you what type of lymphoma it is as there are many different types some slow growing that may not need treating immediately and others that do. Have you been signposted to information to help you both understand this type of disease? This site is a good starting point as is Lymphoma Action https://lymphoma-action.org.uk check out the information under the different headings there is lots there and its all lymphoma focused. They also have a range of support options too that may help when you know more about the type of lymphoma your husband has.

any questions just ask I was diagnosed back in 2009 and am now considered cure from having an aggressive type called DLBC 

John 

Hi again Destinyand welcome to our little corner of the community. It takes time to get your head round a Non Hodgkin's lymphoma (NHL) diagnosis. As I said in your post in the New to Community there are over 60 types and subtypes of Lymphoma so one journey will not fir all.

It is not unusual for this amount of time to be taken to see a consultant as it can be challenging to 'type' Lymphoma. Has your husband had a biopsy done of any growth areas.....as this is an important part of the Diagnosis of NHLs.

Some Low Grade NHLs may not be treated immediately as it's important to treat at just at the right time....... but High Grade NHLs tend to be treated quickly. 

Most Low Grade NHLs like my rare type is incurable but very treatable but some High Grade NHLs are durable..... very confusing.

The one very important thing to get about Lymphoma is that unlike solid tumour cancers like Breast, Kidney, Lung, Prostate..... cancers where the higher the stage number the poorer the prognosis..... in Lymphoma it is totally different. Lymphoma can present in many areas but it's very treatable.

Back in mid 2013 my condition had reached stage 4 but I am still here 8+ years on I am still around doing great.

Clear information is important. 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 and a great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

If you would like to ask specific questions we can try and give you specific answers 

Hi Destiny , Evening , (Jean) Gypsy rover , I was diagnosed with NHL in June last year , I had MRI Scans , CT/biopsy to see what kind of NHL it was , I was diagnosed with Burkitt's lymphoma , once I was diagnosed I was moved to a hospital that could treat me , I was in hospital for 14 weeks , I had 4 cycles , M/CODOX -  R/IVAC although everyone's journey is different and chemo regime , After 2 cycle I had a CT scan and my mass had almost halved in size , when I was finished my treatment I was discharged from hospital on September , in remission as of October after a PET Scan , I was on weekly visits to see my consultant , I'm now on 3 mthly visits , I'm slowly getting there as being in bed for most of the time I'm building my strength back up , I had neuropathy in my finger tips ( pins , needled & numbness ) if that happens tell him to tell the staff , any symptoms that change just say to the nursing staff as it could be a simple chemo change as they told me but as it stayed in my tips there was no needed to change my chemo , with this COVID I don't really go out , only if I need to , I have a portable treadmill & use that & all the exercises that physio gave me , he'll get there , it's a shock to the system I'm not going to lie but we're all fighters and he'll do it also , Take care , keep safe and well and ask me anything , keep in touch , let me know how he gets on Xx  

how old is your husband, tell them to speed up the process as it spreads very fast

Hi Destiny I was diagnosed with high grade Diffuse B-Cell Lymphoma in December and currently undergoing Chemo and Immunotherapy {RChop).  You will find a lot of helpful advice and some wonderful caring people here.  The time between diagnosis and treatment can be difficult but try to remain positive, I know it’s hard.  Your husband should be on the 14 day cancer pathway which means that he should have tests and see a consultant within the 14 day timeframe. 

My 24 year old son was diagnosed with NHL high grade in January 2021, had 6 RCHOP, but his Lymphoma was refractory and it didn't work fully.Then, he had two sessions of ESHAP and made him very unwell.He ended  up staying in the hospital for 6 weeks as he was very unwell.We were told in October 2021 that he was in complete remission.He had stem cells transplant   he was doing good but in 6 weeks time he felt fatigue and loss of appetite.He was about to start Uni to do his MSc, we booked a studio flat for him.we took him to queens hospital due to his fatigue.They did his X Ray's of his chest but it was clear.I requested to transfer him to UCLH for his better treatment as his his stem cell transplant was done there.He was moved to UCLH, where they did his CT scan and bone marrow biopsy but they were all clear.All in sudden he started coughing and required 30% oxygen, the he moved to ICU and placed him on Ventilator.we were called to the hospital and told he would die.In next couple of days his liver and kidneys failed and he sadly passed away on 11th February 22.

Everybody is different and have different type of disease condition.I don't want to scare anyone but by reading what happened to my son which was totally accepted.Poor communication from his stem cell transplant nurse.

Please be careful with your treatment and ask everything related to your treatment.God bless anyone suffering from cancer and especially at young age.

I am so sorry to hear about your son, I can not imagine the pain. I am confident he is still with you in spirit. I will definitely be careful with my treatment. Thank you for taking the time to respond to me at this very difficult time for your family.