Thank you for replying to my post. I’m still trying to navigate this forum and don’t know how to reply to individual replies!
I suppose for me, it’s the ‘not knowing’ and feeling that everything is up in the air. I’ve been diagnosed 5 years and been on watch and wait so it was a bit of a shock when at my last appointment, the doctor said it was time to start treatment. I’ve not really felt poorly but my blood tests show otherwise.
I’m used to being the carer in the family ….not the one being cared for.
Can anybody tell me how many hospital visits I’ll be having during the first couple of months?
Thank you for taking time to reach out and post on the forum.
I’m so sorry to learn of your circumstance, and as a Chronic lymphocytic leukaemia (CLL) patient myself, my heart goes out to you.
Its fair to say that whilst we and many others share the condition, and our treatment may also be similar, we as individuals are quite different and we need varying amounts of support during our journey.
If you scroll to the bottom of this page, you’ll also see a ‘Related Topics’ section, which can suggest other Forum threads you might find useful. In the meantime, these threads might be helpful:
I hope other Forum members who’ve been through a similar experiences (even if the details differ) will add their thoughts too. And if you’d ever like to talk things through one-to-one, our Support Line is there on 0808 2080 888.
It’s always such a worry when a new treatment is started and I think it’s so natural to worry about the side effects.
Treatment can have different side effects from everybody but the good thing about the forum, is that there will be others who can share their experiences with you.
Ive copied in the @BloodCancerUK_Nurses in case you had any specific questions and remember the support line is there if you need to talk things through.
Don’t worry, it takes a little while to get the hang of the technical side. To reply to a specific person, type the @ symbol. A list of usernames within your post , should pop up in a box; you can then just click the right one to ‘tag’ them so they see your message, or type the first few letters of their name after the @ symbol.
I’m so sorry the news was such a shock. It is incredibly tough when you don’t feel ‘poorly’ but the blood results say otherwise—and even harder when you are used to being the family carer rather than the one being cared for.
Regarding your question about hospital visits: I had a different type of blood cancer, so my experience will vary slightly from yours, but during the first few months of my treatment, I was at the hospital almost every two weeks. This was usually for blood tests to monitor my response or for the treatment itself. But once settled I now only go every 3 months.
Members with Chronic myeloid leukaemia often say the first 8–12 weeks are generally the most ‘intensive’ for appointments while they get your dosage right and monitor your blood counts.
• Frequent Bloods: Usually every 1–2 weeks at the start.
• Clinic Reviews: Seeing your specialist nurse or consultant every few weeks to manage any initial side effects.
• Settling Down: Once your levels are stable, these visits usually ‘stretch out’ to once every 3 months.
@Jules,
Thank you for your message. I suppose I’ve just got to give myself some time to get used to everything. Everyone seems so positive and helpful, and I am grateful that we have the NHS! It’s just alot to get my head around and it can all be a bit overwhelming.
Thanks again for your support.
