Hi, I recently was diagnosed with hodgkins lymphoma with a slight complication, I was also diagnosed with active tb disease running side by side. I had a uncle who died of tb disease, he was refusing to take the medication that could help him due to mental health issues. I believe that's where I got infected 10 years ago now. I believe the lymphoma triggered the tb. I first noticed symptoms 2 years ago of lymphoma as my lymph nodes swelled in my groin, two lumps. I went from being strong to weak practically over night, lost energy was fatigued easily, walking my normal routes I would become breathless easily and small inclines I was partly passed out, I felt I had aged 20 years in a short space of time. I thought it would eventually pass and was practically impossible to see a doctor as during covid. A few months later I explained my symptoms to a doctor and was booked in for emergency blood tests and examination. The doctor kept asking if my lymph nodes hurt when drinking alcohol and at that time I didn't really know, I had other symptoms instead. I was homeless at the time and forgot the doctors had a old address and number for me, I completely forgot. When I never heard anything back, I presumed no news is good news but I continued to get ill. My recent diagnoses as put my hl treatment on hold. I have to wait till clear from infection before starting other treatment, so already 6 months of treatment for tb. I have not been able to go back to the hospital with tb so I still have not spoken to my hematologist or oncologist, I am finally getting a phone call from consultant on Wednesday so finally should no more, I have just been diagnosed not told what stage its at or anything, so the anxiety drives me around the bend. Almost 3 weeks after diagnosis. Even though I was not told anything else it was given away in a letter I received saying first cycle booked picc line insertion from a ward that specialises in chemotherapy was a slight give away. If it wasn't for the tb I would have started chemo a week after I was diagnosed, so so around 3 weeks behind now. I will know more Wednesday anyway, but this basically my shortened story of the last two years and the struggle to get diagnosed, I am grateful I got so ill in the end that I got admitted to hospital, having all the tests done, finally I was going to get answers. Wasn't expecting the answers I got though although I suspected it was possibly lymphoma as my symptoms Brought it up so much on Google search but friends said don't be daft it won't be that, we'll it was in the end.
Hi Lonewolf 02 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. I don’t have Hodgkin's Lymphoma (HL) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
Sorry to hear about the TB complication, my dad had TB but it looks like nothing was passed to me.... although I do have Asbestosis so this made some of my treatments that touch more complicated and I am well open to chest infections.
First line treatment for HL would normally be seen as strong Chemotherapy Treatment and this is why you would need a PICC line as it just makes everything more straightforward. I had a PICC line for my first chemo, it went into my arm and it only took about 30 mins to put it in and apart from a little sting when the local anesthetic went in I never felt a thing...... and this makes your regular blood tests much simpler.
On the whole Staging in Lymphoma is rather different from most other cancers where if your received a Stage 4 diagnosis it was very bad news....... in Lymphoma it's not. Staging is used to identify where your presentation areas are, what is the best treatment and for how long...... I was Stage 4a back in Sep 2013 and I am still here today talking with you.
You most likely will see a Hematologist as these are the Blood Cancer Experts. The following link will help you get your head round the questions you may look to ask..... Questions to ask your medical team about Lymphoma....... one tip - get yourself a notebook and start writing down all your questions and when you get answers put this in your notebook....... I have notebooks going back 23 years and these contain all my notes, treatments, thoughts, contact names and numbers for my clinical teams......
Don't be overly concerned that your treatment has been delayed...... this happens a lot and indeed happened to me and in the end made no difference to outcomes.
The BOLD links above are all taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients. I highly recommend these groups as there is nothing better than 'talking' with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
Always around to help more or just to chat
Getting control of the space between our ears is very very important and when you have this under control the rest starts to fall into place.
Always around to chat.
