My diagnosis after 6 years, Lymphoma EMZL, AL Amyloidosis and Myeloma

[Pipido36]

Hi everyone, It's been some time since I updated my situation after having been told my Lung nodules had grown. I had a lung wedge resection last year July after a biopsy which was terrible. I had infections a couple of times after the surgery. That is when I received the devastating news about my diagnosis. Due to the other conditions I have, I refused chemotherapy so I am on a wait and watch for now. It has been very difficult for me but I have learnt to accept it. I am taking each day as it comes. I have since noticed I have become an infections magnet. I hope this rant is not too much.

I will keep on keeping on. Xx

[Elt79]

I am so sorry to read your news such a difficult time for you - wishing you the strength to deal with this xxxx

[Pipido36 in reply to Elt79]

Thank you. Xxx

[JanetteR57]

sorry to read you're struggling. I'm presuming the chemotherapy was adjuvant - i.e. after surgery to mop up any stray cells? Surgery is usually carried out with curative intent. My upper left lobe was removed in Dec 2010 and I didn't have chemotherapy despite my tumour being 7cm (now that would be recommended) as I was told it didn't work for my specific rare type. I was on active surveillance /watch and wait and quickly put into annual pathway as I was fit and active. I've been very prone to chest infections since 2015 and ended up in hospital annually with different infections (RSV, pneumonia, pseudomonas) and again in October (looks to have a different cause this time). I'm still grateful that I was eligible for surgery which was open (keyhole didn't exist in 2010) as so few are detected when this isn't possible. I found reading helped me - cancer is a word not a sentence by Dr Rob Buckman and 'anti-cancer a new way of life' by Dr Servan Schreiber (and his other book ' healing without prozac') helped me come to terms with what I'd experienced and put life into context. I also try and keep active with walking, working and swimming which help both physical and mental health. I did not experience infections during the pandemic or not of the same magnitude so know that some of the measures society adopted helped me - hand washing, face coverings, social distancing etc. Have you considered pulmonary rehabilitation or respiratory physiotherapy to help you develop some more resilience? worth talking to your clinical team about your feelings so they may suggest some ways to support you. good luck.

[Pipido36 in reply to JanetteR57]

Thank you for your reply, I can tell you went through a lot. During the pandemic I was very careful and adhered to all the requirements as you said. I was having difficult with breathing but was not that severe as I was doing breathing exercises and keep myself occupied as I was isolating. So from 2019 to 2021 I was not that bad except that I started coughing non stop for months and ended up catching covid 3 times though I was not going out that often except for my walks and avoided people at all costs. As I have 3 nodules on my left lung and I had 4 on the right side we agreed with my doctor that I should have the right lower removed after the first biopsy. They said the nodule was growing towards the lymph nodes. The biggest of the nodules (3.5cm) is on my upper right lobe but they said they were not concerned about that one as there was not much activity going on and its growing very slowly. After my keyhole surgery in July 2023, which took more time than they had anticipated I was put on pain medication but after one week I started having difficulty breathing and was taken back to hospital and after tests I had a blood clot though I was still on tinzaparine. I did all the exercises and was walking within a few days after surgery but since then I always have infections every now and again. I get pleural effusions and at present I have one and its painful. The had suggested to put me on long term antibiotic treatment (Co-amoxiclav) of which I refused after reading about side effects of long terms use. At the moment I am on a two week prednisolone treatment and just finished doxycycline.

I will look into the books you mentioned. I have a very good Specialist Nurse and is always ready to listen and was referred to a pulmonary physiotherapist. So far my breathing it not that bad. Its only that when you try to make sense of it, it is really hard. I have Lupus and other conditions which also causes infections and for me to have chemotherapy its very risky. I will take each day as it comes and I am a very active person.

Thank you again for your story and encouragement.

[JanetteR57 in reply to Pipido36]

sounds hard - I know another cancer survivor with lupus (not lung cancer) and like you, she works hard to keep herself as fit as she can. As you say, when you mind tries to work through the experience, it can come up with all sorts of strange thoughts which for me, was where reading came in then getting involved in advocacy and research to learn much more about it. for me, that information helps no end - as I'm sure you have done with your lupus. as you've been told, most lung nodules do not develop into anything harmful so it's good that you have a good specialist nurse. I never had one and many surgical patients don't always have the same sort of support or access as those on systemic anti cancer treatments like chemotherapy, immunotherapy, radiotherapy etc may have.

Like you, I took care during the pandemic and missed my regular activity - swimming - but did walk almost every day on my own for my lung health. Avoiding people but being in the fresh air (which incidentally due to lower traffic felt much cleaner too!) and active also helped psychologically. When I read the book 'cancer is a word not a sentence', it also put into context how many infections/conditions we might develop in our lifetime and when I thought back more rationally, I'd had many chest infections as a child (had my tonsils out before I was 4 to apparently help!) and had allergies/asthma that had laid me low but I tried to keep active. However I didn't really pick up aerobic exercise in many guises until my early 30s (I was 52 when diagnosed) but had done many - medications have caused me to gain weight with such frequent infections in recent years and impacted my ability to swim or keep active so I know it can be quite a vicious circle. hope you find a way to balance having a life, coming to terms with the treatment you had and getting through it better. I attended counselling a couple of years after my treatment when a particular set of symptoms had the clinicians fear it had returned so I went back into pathway and saw no end of specialists after losing 6 stones without dieting in a very short space of time. Thankfully the investigations showed it hadn't returned but my adrenal glands had gone into some sort of chaos after stopping steroids suddenly after infection so now I have to have longer tapered courses (with their side effects). I also have prednisolone and doxycycline as 'rescue pack' after most other antibiotics don't touch my symptoms. hoping you find something to help you soon.

[Pipido36 in reply to JanetteR57]

Thanks again. You sound like me. I have read a lot of journals and research material on Lupus and have since discovered that as I had infections when I was young which ended up causing Rheumatic heart fever, I was bound to have Lupus in the end. Now with cancer I have also been reading a lot on the different types and how rare some are especially Extranodal marginal zone lymphoma with Amyloidosis. I also agreed to be in a research programme for Amyloidosis. I am under The Royal Free hospital Amyloidosis Centre in London. Which is very far from where I am but they do liaise with my Heamatologist. I also gained a lot of weight through the years and I have tried to loose it but it's really hard. I really appreciate having this platform where you can chat to people in similar position. I will keep looking into different useful things to help myself. Thank you again and stay blessed.

[Babtino]

Why are you getting these infections? I had the same operation as you a year ago. Can you remove an entire lobe with keyhole surgery. I notice l have had two serious colds since surgery.

[Pipido36 in reply to Babtino]

In my case they said its because I have Systemic Lupus Erythematosus which is a chronic autoimmune disease that already attacks my internal organs so the surgery is like a threat to my immune system so my body goes into overdrive. Lupus causes a lot of chest problems including the lungs. Same here about having serious colds now that I end up staying in bed for a couple of days since I had surgery and the pleural effusion seems not to go away permanently. They are now thinking of putting me on Rituximab and see if it will help. I am not sure if I want to have it yet. About removing entire lobe through keyhole the answer is yes the surgeons can do that. And by the way I am having colds every other month now since surgery.

Take care