my dad was diagnosed with stage 4 non hodgkins lymphoma just 9 weeks ago,after starting with leg pain. He has been in hospital ever since. Whilst working out which cancer he had,he had to have IV drips to reduce his calcium and steroids to reduce the tumors. After a treatment plan was put in place,we all felt positive. HIs first dose of chemo was administered over 2 days so they can observe how he would respond.5 days later I was woken in the early hours and was told he had had a bleed-being sick and in his stools. Endoscopy showed nothing.He then got Covid,neutropenic sepsis,oral thrush and then pneumonia. He has lost a lot of weight. Hi second cycle was pushed back. He is now a lot better and they are looking to get him built up weight wise and ready for his 2nd cycle. We have been told that if he does not have treatment,he has 3 months at best. My dad wants to fight it and wants to continue with chemo. The statistics for stage 4 non hodgkins lymphoma all sounded positive,now I fear aftter his second chemo that he now has no reserves (given what he has just fought) and thetreatmnet may be the thing that takes him away. Just wondered if there are any positive stories out there,similiar experiences. Hoping that talking about it may help.Thanks .
Just wanted to share that I too had Non-Hodgkin lymphoma (NHL) stage 4 when diagnosed. I was hospitalised with high calcium, also had steroids to start with. Firstly it’s important to know that stage 4 lymphoma had different connotation to stage 4 solid cancers like breast or lung cancer, it’s still very treatable (staging in lymphoma describes where it’s been found). I didn’t have a rough start to treatment like your Dad sounds to have had but everyone reacts differently. They will monitor your Dad’s blood levels and if they are too low they may defer the next chemo round by a week or two, don’t worry if they do, it’s perfectly routine.
He will probably be given Filgrastim injections to build up his white blood cell/neutrophil levels between each cycle. I’ve been in remission now for 3 years since finishing treatment . Wishing you and your Dad all the best for the rest of his treatment journey
Hi there
It’s surprising just how tough the human body is and how much it can cope with
I have a different blood cancer
I was in and out of hospital throughout my first chemotherapy constantly sick, blood clots from picc line in my lungs and shoulder cellulitis in my eyelid lost 2 stone in weight but somehow I kept going I believe my wanting to live for my family as a single mum helped
I have done two stem cell transplants and more chemo
I have had blood transfusions platelet transfusion
Filgrastin injections
My bloods were monitored and interventions given when needed
Hi @Wooliejahr I am so glad you have found us and already you have had a couple of peoples experiences.
I would like to look at your post from a different angle, Your dad is being looked after in hospital and obviously you are a very caring offspring and I just wondered how you are doing?
I think as a family member it can be exhausting and feel very powerless to make your dad better.
I have found the emotional, physical and practical toll can be overwhelming and often nobody asks how you are.
If you would like to speak to someone the Blood Cancer UK support services are there for you on 0808 2080 888.
Perhaps write down all your fears, questions and practicalities to ask you dad’s medical team if it is OK with him.
Please do look after yourself as well as you are caring for your dad and be very kind to yourself and please do keep posting. I find this is the one place I can really say how it is for me.
thanks for your kind words. Luckily I am one of five children so we are sharing the load.Not easy as we all have young children. I have found this forum really useful and informative and shall indeed tap into the Blood Cancer UK suppport services.
Hi @Wooliejahr so sorry to hear about your Dad and that he is having a tough time. Like others have said we do all experience treatment differently and it depends on so many factors. How fit and well you are to begin with , the stage of your lymphoma etc.
When I was first diagnosed I had already lost over a stone in weight I was fortunate to have time waiting so in the three months it took to stage and get my diagnosis my consultant had me on a high fat diet to to get me ready for my treatment. It did help me be stronger.
Once I began treatment it was never ran smoothly after the first one the second was delayed by a week as my liver didn’t like it , after the second my white blood count plummeted and it was delayed by a week, the third my liver was being silly again … and so it went on . Once I was hospitalised. My doses were adjusted down each time. I think what I am trying to say is it can be a bit up and down I was really strong fit and healthy going into it but still had lots of ups and downs at 48, so if your Dad is older than that it can take it’s toll so it’s about taking each day as it comes and asking for help with any symptoms he is experiencing. Don’t suffer there will be something to help anything he is experiencing.
I was stage 3 with a huge abdominal mass. Six years ago - doing well on watch and wait
Non Hodgkin’s Lymphoma is a huge group of disorders unlike say Hodgkin’s Lymphoma or Myeloma which is just one.To that end the prognosis for stage 4 PCTL NOS ,a rare T Cell one,will be quite different than for Follicular Lymphoma ,a fairly common B Cell one.Roughly speaking the more common they are they easier they are to treat.Most are B Cell and fairly well understood.I have a T Cell one and they are difficult to successfully treat probably because they are uncommon and not so much research has been done on them?There are NK Cell ones too,NK Nasal Type being an example,but they are very rare and lumped in with the T Cell ones for convenience .
Today is a good day because my dad is being discharged. He needs feeding up ready for his next chemo cycle just next week.
It is completely 50/50 as to whether he will survive his next dose-but this is my dad’s choice,which we need to respect.
We will be making the next week count and banking what we can.It is very difficult living with uncertainty,so am trying not to think too far ahead. My dad is 76 fighting,and this has been his personality for as long as I can remember-to always do your best
I found this chat forum such a source of great comfort and information. My dads outcome looked not great a few months ago and although people tell you to have hope,sometimes it is hard. I just wanted to report that you shoud have hope. My dad completed all of his chemo treatment without any further infections and his recent PET scan just came back clear. At 77 that is no small feat. AMAZING! I am going to look at raising some money for blood cancer in the hope that the amazing medicines that are used are continued to be funded and researched as they are helping to fight back at this disease which seems to be affecting so many people both young and old. Thanks for listening xx
Oh @Wooliejahr wonderful to hear from you again and that your dad is doing well.
Yes, Blood Cancer UK does fund a lot of varied blood cancer research and trials.
I reckon it is exciting times and targeted treatment plans and kinder treatments are more frequently being approved by NICE.
If you are thinking of fundraising do talk to the Blood Cancer UK fundraising department and you can reach them via the support services on 0808 2080 888.
The main thing is that you look after yourselves and please do keep posting how you are all doing
