I have Chronic Myeloid Leukaemia as well as Asthma, various allergies (including nut allergy) and IBS. All my blood tests results are currently doing well and my BCR-ABL is non detectable currently. I am on Imatinib.
I have just been told by my hospital consultant that I can now have my first Covid-19 vaccine. I was told not to have it before now due to my other health conditions and due to having a lot of allergies.
I am very nervous about having it done.
I just wondered how other people with Chronic myeloid leukaemia have got on with having the Covid-19 vaccines or how other people with Chronic myeloid leukaemia and allergies or other health conditions got on with having the Covid-19 vaccines?
Also how are people getting on with going about in everyday life?
I have basically been shielding since Covid-19 happened and still am? I always wear a mask if I have to go to a hospital/doctor appointment even now when no-one else seems to be bothering with masks.
Also are Chronic myeloid leukaemia patients still testing for Covid-19 if they get any symptoms and then if they are positive isolating at home away from other people?
Thank you for any help or information you can give me.
Hi @ElaBridge welcome and thanks for all the questions you have asked.
Firstly from what you have said you have several different conditions and I think it might be best to ask your GP, nurse specialist or consultant all the questions as we are all very special unique beings.
I find I need to write down everything I would like to ask as my mind goes blank every time I walk into anywhere medical.
If your consultant has already told you that you can have your first Covid vaccine now, then the choice is up to you whether you do or not.
If you decide you do you might have to find out where you might have it as I believe (and I am not medically trained) the common availability was going to cease from the 30 June until perhaps the autumn.
Personally I have Chronic lymphocytic leukaemia (CLL) and I am not on medication for it although I do have other conditions. I have had 7 Covid vaccines without side effects.
I also always have my flu and any other inoculations.
Basically I am going out and about and if I feel I am going into a high risk situations I take precautions and wear my masks. I can ask others to make reasonable adjustments for me, but I cannot make them.
If I were to get symptoms then I would do a Covid test and if positive contact my medical services and not go out till I posted negative.
I stress this is not a medical reply .but a personal one.
I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses and If you would like to talk to someone then the Blood Cancer UK support line is on 0808 2080 888
The main thing is that you do what you are comfortable with, look after and be ever so kind to yourself
Hi @ElaBridge .I am a fellow cml patient but i don’t have any allergies so may not be your target replier. In my case i have had the 7 vaccinations for the vulnerable but had no serious side effects.
Personally i no longer shield but i do keep a mask in my bag and use it if i feel there is a risk. I haven’t done any big indoor events yet and have used my mask on trains that are busy. I have been surprised that there are still a few others doing the same in London. I have done a big outside concert (Pink, Hyde Park) where i felt i was reasonably safe.
I do still have boxes of tests and do them if i get cold symptoms. I would inform my GP if it was positive which i believe is the new rule.
I think you need to do what you feel safe doing and ask loads of questions about the jab if you are concerned.
Hi @ElaBridge, a very warm welcome to the community and thank you for posting. It’s understandable to feel nervous. May I ask whether you’ve shared your concerns with your team or your GP? We’d encourage you to do so, as they might be able to give you some reassurance and support around this.
I thought I’d share our website information around accessing covid treatments, just in case it’s useful- Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK. Some people with CML may be eligible for treatment if they do get covid, which is why I share this.
If you’d like to talk things through, please don’t hesitate to reach out to our Support Team (0808 2080 888 or firstname.lastname@example.org). We appreciate it’s not easy making decisions but as others have said, it’s about doing what’s right for you.
Hi @TanyaBloodCancerUK, thank you for your message.
Yes I have tried to talk to my CNS at the hospital. Unfortunately I didn’t really get the reassurance about this that is why I wanted to post something on this forum.
Thank you for the link about antiviral/antibody treatments.
Hi @Chrispy, thank you for your message.
It’s good that you have been able to have all the vaccines and have been getting out and about. I hope that you enjoyed the concert at Hyde Park.
I have been trying to ask lots of different people about the vaccines, so hope to get further information or something sorted or my mind settled soon.
Thanks, kind regards.
Thanks for your message @Erica.
From what I understand if you are a clinical extremely vulnerable person (which includes Chronic myeloid leukaemia patients) you can still get the first Covid-19 vaccine.
Thanks for all the information.
I have tried talking to the CNS at the hospital already. Hopefully I will get further information or get things sorted or my mind settled soon.
Hi @ElaBridge thanks for letting me know that the clinically extremely vulnerable can still get the first Covid vaccine, that is really helpful information.
Take care of yourself and please keep posting