The chemo hasnt worked to eliminate the cancer cells and there is nothing else to offer. It’s tough to get that consultants speech that may as well have a shrug of shoulders with it.
I have medication to help with risk of infection and transfusions to help cope with breathlessness.
I feel brushed off, in fact I never felt much in the way of upbeat from my McMillan Haemotologist or the CNS nurses.
What about 2nd opinions? Sure, there are weekly medical conference calls of cases in the region but there has been occasion of poor communication.
Would other regions have other ideas? Dr. says they spoke with Leakemia Society and there are no suitable clinical trials.
What about paid-for Alternative Therapies? Anything to sustain my health? Where do I look for this?
I feel on my own without a medical guardian on my side, just what the Dr. says.
In a way I dont want to ask these things for I expect to get the usual shrug and shake of head but sometimes I refuse to give up. I am made of tough stuff.
Most times though, I push the shadow away and get on day by day with my supportive wife,in all the ways of positive best behaviour.
I do have emotional support, I just feel that medicine and science hasn’t been here for me.
@JohnDP I’m so sorry to hear what you’re going through. You might find it useful to speak with our clinical trials support services nurses? If so, here’s some more information and a link to the referral form - How our Clinical Trials Support Service can help you | Blood Cancer UK.
Our support line is also here for you on 0808 2080 888 if you want to talk things through.
Hi John, I’m sorry you are going through this. We had the same with my dad (not with leukaemia) so understand how alone you feel. Don’t give up. Phone the helpline and the clinical nurse here on this website. Ask for a second opinion, they might be able to try a different chemo or try to see a private consultant. ……keep trying John……sending you strength
Oh @JohnDP welcome I am so glad that you have found us.
I was so struck by your words ‘I feel on my own without a medical guardian on my side.’
You are entitled to feel brushed off and abandoned, but you also show that you are made of tough stuff.
Yes, a 2nd opinion on the NHS or privately are definitely options available to you, and @Alice_BloodCancerUK and @Catpat have given you good responses.
Your wife sounds a supportive star which helps a lot.
The Blood Cancer Support line is brilliant for when the shadow envelops you, it has been there for me when I needed it.
Also the Blood Cancer UK nurse advisors are all lovely.
I have not heard of any alternative therapies, I just try and eat a healthy diet, with some treats, and I am a great one for fresh air and appropriate exercise, I am a great walker.
You certainly won’t get a shrug or shaking of the head on our forum.
Please do feel free to share how it really is for you, sometimes I have felt it helps to really be honest on here than burdening my nearest and dearest.
I look forward to hearing more about you so please keep posting, look after yourself
Hi @JohnDP,
Thank you for contacting the forum. I am so sorry to hear your news. I see that you have been given great suggestions from other members on the forum.
Please keep talking to us. It may help to set out your feelings in the privacy of this forum, especially as you are having a very stressful time. Feel free to use us as pressure valve.
You mentioned that you feel that you don’t have a medical guardian by your side. I suggest that it might be worthwhile talking to PALS officers at your hospital. PALS provides help in many ways. For example, it can:
- help you with health-related questions
- help resolve concerns or problems when you’re using the NHS
- tell you how to get more involved in your own healthcare.
Everything you say to them would be kept confidential and wouldn’t jeopardise your relationship with your doctor or other members of your medical team.
I spoke to them when I was concerned about the information and service I was given during my diagnosis for lymphoma, and they were very helpful in finding a solution.
They can be found on What is PALS (Patient Advice and Liaison Service)? - NHS
Take care of yourself and live your life as best you can with your lovely wife!
Dear @JohnDP
I really feel your sadness and disappointment about your medical care coming through. It is natural to want to exhaust all possible options and, of course, it is so upsetting when a clinician delivers such bad news. I had a friend who recently received a similarly dismal prognosis with no further NHS treatment available. He was very angry and upset at how the news was delivered and embarked on a whirlwind of special diets and supplements and finally went to a private clinic in Germany which promised him better outcomes with a series of vitamin infusions, hyperbaric oxygen treatment and many other alternative treatments that were not evidenced to be successful. This cost over £25,000 which was raised by his wife through Go Fund me. Sadly, he developed sepsis and died in Germany away from his family and friends. People had kindly supported him even when they themselves were uncertain about his choice of treatment.
I am not suggesting you might consider anything like this. But people become desperate and will clutch at anything.
I know this may not be what you want to hear but have you thought about asking for a referral to a palliative care team at your hospital. Too many people only involve them at the very end of life when it would be more beneficial to involve them earlier. Often with good palliative care, people live far longer than with conventional treatments. Please don’t think of this as giving up or losing a fight and it certainly doesn’t mean you are weak. With the support of such a team, you could find that you can be made physically and mentally more comfortable and you could be spending precious time enjoying life with your loved ones instead of potentially chasing after undergoing more toxic and uncomfortable treatments or clinical trials whose outcome is uncertain?
I only write this as I have seen many people enduring difficult treatments when there has not been much hope. I know you have not had a positive experience with MacMillan but maybe a counselling session would help you review your situation?
I wish you all the best at this difficult time.
Thanks. Yes, it is a strong compulsion to look elsewhere for a fix, as we have done with every other problem encountered, it’s part of not giving up. A hard balance to be positive but not desperate.
I had sepsis after my last chemo, was very poorly and is significant risk of another chemo when last did not achieve the intent.
Thanks for the insight into palliative, it has been mentioned, to be discussed more.
I appreciate your reply thank you.
Just to send you my best wishes. I often feel not listened to and because I look well family and some friends don’t understand blood cancers as they can’t be seen. Even my consultant phone calls seem to ignore things like great fatigue and dizziness as long as the blood test numbers are ok. Lucky you to have your wife, I live alone. Good luck and best wishes from very sunny Kent.
Hi @Belinda you are certainly not alone you are part of our forum family as so many of us, with different blood cancers, have your symptoms and are told how well we look, it’s that having a hidden disability.
I bet living in the ‘Garden of England’ is a bit more brown than it’s usual lush green at the moment.
This is your place where you can say how it really is for you, look after yourself and please keep posting…
Hello JohnDP, I’m so sorry for your prognosis. I’m afraid I don’t know how to answer your question but, I send you my very best wishes that you may get a positive answer soon.
@JohnDP, I could have wept reading this as it so closely mirrors my husbands experience last September when he was declared terminal. Chemo didn’t work (even the very aggressive chemo) and he was advised to enjoy the time he had left. Devastated doesn’t begin to cover it. Fortunately he had an amazing haematology specialist nurse who rang the Christie hospital in Manchester and they are running a trial which he was able to get on. Almost 12 months later and he’s still here, alive and well. We know he isn’t cured but he’s stable and with the help of weekly transfusions leads a normal life. The trial he’s on doesn’t seem to be listed anywhere except on the Janssen website but I know several hospitals throughout the UK and worldwide are running this trial. It’s well worth having a look as I think they’re still recruiting?
Good luck. I’ll check in to see your follow ups.
@JohnDP A study of JNJ-74856665 in Participants with Acute Myeloid Leukemia (AML) or Myelodysplastic Syndrome (MDS) | Global Trial Finder
This is the link. Maybe something you can look into? Obviously I’m not a medical person just sharing our own experience.
Thanks for the link, Cathy, have passed it towards (triage phone operator actually) my Clinical Nurse Specialist. Will be pressing for response when I go in for transfusion on Thursday.
John Parsons
Hello Belinda, thank you for your interest.
I go along with what you say about the disbelief of others that their anything wrong.
Sometimes I even look at myself, looking quite fit and well, and wonder how on earth can I have this hidden alien species inside me, consuming me from inside out.
Breathless here when I over exert with manual activity,
My wife has certainly stepped up i her effort to be positive for me - although my worry is that if widowed she will be alone to cope for herself. No family much here but we fortunatley have trustworthy support for her though.
Take care my dear, thanks so much for expressing your feelings,
John, in sunny Norfolk (born in Lincolnshire, made in the Royal Navy, diversified in USA, settled in Norfolk)
thank you for your wisdom Purdy
Hi @JohnDP I have been thinking of you and I just wondered how you are doing, feeling and thinking now?
Be kind to yourselves
Hi @JohnDP so sorry to hear about the way you were treated. I know from personal experience that the NHS is not a perfect beast and I didn’t feel very supported throughout my treatment. Alice has shown you the way forward I hope and I hope that you are able to get some sense on what you’re going through. Let us know how you are doing. I’ll be thinking of you.
JohnDP - I Just wanted to add my admiration and support. I love your brave and honest words, and your clear-eyed courage in the face of very tough outcomes. I’m 4 years into a journey through Acute Myeloid Leukaemia, ALL, Sepsis and Lymphoma - what an adventure !!! Good luck to you my friend. Stay honest, and look after your very special wife.
Hello Cathy, to reply direct to you re: the Janssen / JNJ Acute Myeloid Leukaemia Trial.
The trial recently closed early due to lack of eficacy.
We’ll never know if the tardiness of my heamo department in getting off the application and then to the wrong address delayed me beyond the closure date.
Hello all, here is an update ofmy condition.
The good thing is I feel quite well physically. I slowed down my pace of moving and doing things.
Mentally I am hanging in here, I never been the most bouyant of men anyway, if I go down mentally it is a long crawl back out.
I get weekly transfusions of whole blood to boost my haemoglobin.
I do not get routine platelet transfusion and so I get bleed blemishes and slowness of skin abrasion damage repair. The worst is the blood blisters inside my cheek and I wake with taste of blood despite the best of mouthwashes.
On paliative, we have a local hospice that are providing breathing awareness classes and then physio - and someone to talk with if I or my wife needs it.
On 2nd opinions I paid for a private review of my notes and although the consultant came to same conclusion of my contact consultant I felt it was good value for the better frank and honest discusssion.
On Clinical Trials, the one runing that had potential has been prematurely closed for lack of eficacy. I have my name and history on watch list with a Consultant and that runs clinical trails.
Applications are in for Attendance Allowance and Blue Badge, they will get approved on basis of, sadly, short term prognosis.
Hmmm, what else, I don’t really like to report all this cos it saddens me now that the hope of 2nd opinions and a promising trial have been dashed.
I know I must keep up hope and a normal life.
Thanks for reading.