Bloods dangerously low after follicular lymphoma treatment has almost finished

Hi there, I’m writing on behalf of my brother who is almost at the end of his 6 months of chemotherapy and targeted antibody therapy. His body has responded well to treatment which is amazing news, his Consultant said he has been very sensitive to the treatment to the point where she decided to lower the dose of chemotherapy on his 5th cycle and said he didn’t have to have a 6th cycle of chemotherapy, just the antibody targeted therapy. Obviously this is great news as it proves the treatment has been successful but it has also left him neutropenic. He had the 5th cycle four weeks ago and when he went for bloods to see if he could have cycle 6 his neutrophils were 0.2, he’s been taking Filgrastim injections which he really suffers with and has been feeling quite unwell, probably for longer than he normally would have done. He’s working himself up thinking something is wrong and with the virus around it’s all he can think about. He worried he’s getting it, will get it, going to hospital on his own if he does and the list goes on. Him and his family are shielding as I’m sure you all are too and I worry for his mental well being. If you have any advice regarding his situation I would be grateful. Also regarding the neutropenia, how long could this realistically last and will his bloods ever pick up? It seems like they go up and then come back down again. Thank you 

  • Hi again , sorry to hear that your brother is suffering and his counts are not coming back up, but this unfortunately can happen as we get to the end of treatment.

    My treatment journey was rather different but I also had problems with my counts not coming back up and remained neutropenic for a good 4 months so was self injecting with Filgrastim every day for these months.

    I was not well, could not walk and was not eating but the main challenge was the bone pain from the injections but my team told me to take piriton every day and this was helpful.

    The post treatment recovery will often take just that bit longer than we would home and yes, the mind can start to play tricks and start the what if’s?

    I am now over 5 1/2 years post my last treatment and my immune system has still not recovered in that my neuts remain just on the bottom of the acceptable levels.

    This will improve but unfortunately this will take time.

  • Hi NHJH2019

    So sorry your brother is suffering so much.

    Unfortunately low neutrophil count is very common when having chemo. It will take some time for them to recover, but they will slowly. Mine are still low 2 1/2 years after finishing R-Chop chemo x 6 but improving all the time.

    The 5th and 6th cycle are just about the lowest points of your treatment and you really feel like crap, but trust me things are on an a slow upward curve after that, but it will take time. He needs to be kind to himself and allow his body the time to heal, it's really taken a battering that can't be underestimated. 

    He is shielding so is being sensible and minimising risk from COVID. 

    Neutrophil count will go up and down,  it's normal for chemo patients but will improve slowly with time - tell him to hang on in there.

    Wishing him the best

    Tina

  • Thanks for your reply. That must have been very tough having the injections every day, I know they give my brother bone pain as well which sounds horrendous, sometimes worse than the chemotherapy it seems as an outsider. I don’t think he has found piriton very helpful but maybe he didn’t give it long enough to take effect. 
    Has having a low neutrophil count affected your daily living? He is so afraid of getting an infection, he has two kids who will be back at school and nursery at some point and he needs to go back to work as does his wife, they haven't had any money coming in since lockdown and they struggled prior to coronavirus with his treatment making him feel so low that he couldn’t work or look after the kids leaving my sister in law to look after them and not go to work. I worry that he will not take the time he needs to rest for fear of losing more money. It’s so tough.

  • Thank you for your reply Tina. Thank you, glad yours are improving. I think I have sometimes underestimated what his body has been through and therefore how long it may take to recover. I will tell him thank you. He has been saying to me these past couple of days that he knows he should be feeling relieved/happy/grateful etc knowing he is nearing the end of treatment and he is ok but he doesn’t feel like that, if anything he feels worse than he didn’t when he was first told and thinks it is just hitting him now what has just happened to him. It’s horrible hearing your brother upset and not being able to do anything to help. You’re all an inspiration and your words of encouragement and advice are much appreciated. Thank you 

  • My consultant told me the other day that it will take at least a year for my immune system to recover.  The mental and emotional recovery often takes longer.

    I think it's important to understand that a return to the old normal is unlikely.  A new one will be forged in time.

    Oncology units generally have counsellors and social workers on staff.  It sounds like your brother could benefit from seeing one to learn some anxiety management techniques.

    That said, a high level of post-treatment anxiety is extremely common.

  • Thank you, I think it would be good if he decided to speak to someone, he says he doesn’t need to but I’m hoping he will change his mind. I think the reality of what has just happened is hitting him which I don’t think he was expecting to feel. He will get there but it will take time like you say. Thanks again. Wishing you the best with your recovery.

  • Good morning , a cancer diagnosis and resulting treatment comes with a lot of other challenges not to mention the post treatment recovery.

    The journey can take a significant toll both mentally and physically..... and yes, can take a lot of time and perseverance to come out the other end.

    Having infections is an integral part of my life now but we know what to look out for and what needs to be done and occasions things have to be done quickly. I also have a pack of emergency antibiotics to help catch anything developing.

    I have been good this past winter and nothing major to concern us but the 3 winters before I was 5 times back in hospital (31 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x 2, Sepsis x 2 and now live with A Fib.

    But it’s part of life and on the whole we can live a normal life just watching out for situations where I can pick up infections.

    As I had Stem Cell Transplant it wiped out all my childhood vaccines so I had to have most of them again but I can’t have the MMR so catching Mumps or Measles could be very dangerous, as dangerous COVID but it’s not something we dwell on.   

    In fact I am living a much more content and healthy life. If you have looked at my story I had a very bad skin Lymphoma....... my skin has been clear for over 4 years now so this has changed my life completely.

    Navigating the post treatment life is hard, you may want to have a look at this great paper as it talks about the milestones in the post treatment recovery,

    The money challenges can bring a lot of stress - has he made sure that he is getting all the financial support is in the system?....... A call to the Macmillan Support Line Services on 0808 808 00 00 to talk with our Financial Support and Work Guidance Teams is always worth a try as they know the system well - mostly open 8.00 to 8.00. This service also offers Emotional and Practical Support.

    Macmillan also now proved a phone buddy service so he could talk with someone who has walked the walk - this can be found on the main website home page

    ((Hugs))

  • Thanks so much for your reply. You sound like you have overcome many milestones and have been through it, so glad to hear you can on the whole live a healthy and content life whilst being aware of the risks and when you don’t feel quite right. 

    I’ll definitely have a read of the paper you sent over thanks for that. 

    I’ll also mention the Macmillan support line incase they haven’t gone down this avenue and would like to. A buddy service is also a great idea. 

    He is due to go to hospital on Monday for more bloods to find out if they have gone up at all, I hope so, then he can have his last targeted therapy before the two years maintenance dose begins. Speak soon, thanks again.