The group we never wanted to join!

Hello chippy1978. This is unbelievably hard for you and your family. From what you have said they are still working to control it so there is hope yet. Hopefully people on here familiar with your cancer will read this and talk about how they are being helped, medically or mentally.

There may be a dedicated site within this forum, if there is someone will point you in the right direction.

I am an expert in absolutely nothing but you may well find a bit of counselling helpful. 

I send my best wishes to you.

Hi Chippy

I am sorry you have to join this group, and like Noberryi have no knowledge of this type of cancer but others may.

There is a group for head and neck cancer they may be some one on there that can to relate to your type, i hope so,

It is a hard journey when you take the first step on it and it is hard.

You will get a lot of support from  we keep each other going in good times and bad, great bunch of people.

every one here 

Have that looked at immunotherapy they are using that for so many types of cancer's now,

If you have a Hospice near you be  as they offer so much for people in our situation.

I had complementary  therapy and my husband also received it, they have counselling also if needed, and i have just asked for that.

They do so much it is not just for end of life, so do not even think that, they do pain control if that is what you need,

First time i went did not know what to expect, omg was i surprised, they offer so much,, and believe it or not it became my second family, angels in disguise.

Take Care Ellie x 

Hi,

you did well to fight for yourself and not trust your GP etc. 
I have a Rae head and neck cancer adenocystic Carcinome. I have found I had to fight to get treatment . Mine is slow growing I was diagnosed in 2009. 
I now have lung mets and base of skull mets diagnosed a year ago in October  They gave me 2 years. I have had my tumour profiled paid for my self and I am now on a argeted drug which seems to have stabilised things. If you have a good oncologist you can ask for a second opinion and do your research h to ring out who is the expert in your specific cancer. It has worked out well for me.

I also have eye problems and have double vision I wear prism glasses and have surrendered my driving licence 

best wishes 

Hello Tony

I am so so sorry to hear what has happened to you, and to have such a young family. I am a decade older, diagnosed with lung cancer in March 2020, 2 lots of chemo and ummunotherapy havent worked and I am now in palliative care, and have been given months.

I think for me too it is about what I will leave behind ( hubby and three children) and things I will never experience again. Not made any easier by Covid 19 which has prevented us from enjoying what time we have to the full.

Take care xx

Hi Tony, 

Sorry to hear what is happening to you, I am 55 and have been told that I may have a year to live if the palliative treatment works, I'm having my first review scan in 2 weeks, so I'll hopefully know more then.

I have found this group really great, lots of lovely people with wise and not so wise words! It has really helped me to deal with some of my fears and negative thoughts. I hope that it does the same for you. 

Best wishes 

Sal 

Oh Tony, so sad for you.  Horrible bloody disease wherever it is, mine is in my lung and gone to my liver.  We are all here to support you as best we can.  I expect one of the community champions will be along soon to point you to some useful resources.  Feel free to come on here whenever, lots of us awake during the night.   Lots of us have been reading a book called ‘With the end in mind’ which you might find useful.  Maz xx

Hi Tony 

I'm so sorry to meet you here, I'd much rather it was elsewhere. 

You and your wife must be devastated, I, like others here, know exactly how you feel. I was diagnosed in March 2015 with MDS which is also a very rare bone marrow cancer. I joined a support group outside of MacMillan and found that a GP is only expected to come across 1 to 2 patients in their lifetime.

Soon after I was diagnosed, a separate spinal problem manifested itself and I had to.go into a wheelchair because of horrendous pain that I still have. 

So those two diagnoses knocked me for 6 and I asked for (my wife had to refer me) counselling which I had for a few months because I felt that my life was in turmoil, certainly not going to be the way my close retirement plans were going to pan out. I was diagnosed at the age of 57, the average age of diagnosis of my cancer is 71. I wasn't given a prognosis, different people go down at different rates was how my haematologist put it. 

I wasn't expecting to get to my 60th birthday and here I am, soon to be 63. I have a weekly injection that started before the end of 2015. I am self injecting weekly, I've had around 250 injections with a compound that encourages my bone marrow to produce more red blood cells. Unfortunately my white cells are very low now too. Put simply, my bone marrow is failing and my haematologist says I wouldn't survive a transplant. The operation isn't being offered. 

I've a chink of light for you here Tony. Over the last 4 years of being in this group I have met several members who have outlived what we call their sell by date by many months and years. The reason why is that there are trial drugs available that your oncologist (onco is a frequent term here) can search for you to try to get you into so that's an option that you might ask for. My good friend and confidante here in this group was given something like 6 to 9 months in 2013. I'm surprised that she hasn't introduced herself but currently she is having much pain but she'll be along soon, her name's Annette. 

Well Tony, I hope that has given you some crumbs of comfort and you can move forward with a little more hope. Good luck for the future Tony.

Tvman

Hi Chippy and a warm welcome. I see you have had some helpful replies, like asking for a second opinion, getting referred to a Hospice etc. I would also ask if there are any Trials available for your type of cancer, and are there any other options for palliative drugs.

You and your wife should write down all the questions you have and ask for an appointment with your consultant or Specialist Nurse, or phone the McMillan Helpline as this is answered by professionals! We can empathise, as we have been in similar shoes but you really need professional help at the moment. Good luck and lease keep us posted, especially if you are offered any options!