We need to reach out

Bless you both .new on here myself not sure that I can offer any more than to say stay strong and I am so sorry for you both and all of your family and friends.  It is strange that we feel very little in the way of symptoms and pain , I also was diagnosed purely by luck and a very observant radiographer. Sending lots of love your way .

M

Hi,  so sorry to read your post. It is so similar to my journey. Some small different such as my tumor was 20cm, it has spread to the lungs and liver plus the pancreas. I went through the immunotherapy but it didn’t work. The only discomfort that I’ve suffered has been as a result of the treatment and not from the actual cancer. I’m now on tablets called Tivozanib. I have been in them for 15 months and have shrunk the metastasis by about 50%!

my doctor says that the tablets will help to mange the cancer but it isn’t curable so I still have the prospect of it becoming terminal but I’m determined to enjoy what time I have e left especially while I don’t have debilitating symptoms 

My journey started 4 years ago and still going strong so think positive, have as many good times as you can and stay strong.  

I had my kidney and lymph removed Feb 2024. All went very well. 1st scan clear, 2nd in December showed that it has spread to my lungs. I am due next scan in 2 weeks. I know where your emotions are. The elation of being clear to the now knowing is exhausting. The way I am dealing with it at this moment is to live each day as it comes. I get very tired, so when needed I rest or sleep. During energy times I pootle and get my housey stuff done or walk my puppy with my husband, who is amazing. I have many hobbies but often just prefer to read. Don't be so hard on yourselves. You emotions are going to all over the place. You are soul mates, just share this journey together. Hug, laugh, cry...always here if u need a shoulder...hugs and much love

Hi 

I'm stage 4 RCC spread to the lungs as well.  I was diagnosed as stage 4 from the onset in Nov 2021 and started immunotherapy in Jan 2022 and have had some success with it.   

But when I started on ipilimumab/nivolumab I didn't know whether it would work, and it was explained to me that this was the starting point.  Next we could try another immunotherapy, etc etc.  There are a lot of combinations out there.  Some work on some people, others are different and everyone's experience on the drug can be different.  You didn't say what immunotherapy you are on?  

Stage 4 doesn't mean The End.  We're treatable - but the treatment is not expected to cure the cancer.  My lung mets are undetectable now and my kidney cancer has been 23mm for a year now.  Plus, do you believe that anyone is ever "cured" of cancer?  I don't think I do.  My reasoning being that once cancer has visited, people are more likely than non-cancer people to have it return.  

Did they explain to you about pseudo progression?  When immotherapy starts it causes inflammation in the tumour site in the first 3 months.  On CT scans, it can look like new growth has occurred.  However, I note you have new newth on new sites and I can understand how disappointing this must be.

Was it Oct 2024 this started?  It is still relatively new for you.  Retrospectively I found it took over a year to come to terms with having cancer and carrying on as "normal".  Of course, it's easier when the treatment is successful.  I was lucky, but I did have a few blips along the way and have to pause my treatment.  Cancer takes away your control over life.  You can't just do A for better outcomes and it's incredibly complex.  You have the hospital in control of your life summoning you here and there, which probably helps now because it sends signals that action is being taken.  But it's not how we want to run our lives.   

I've finished treatment now.  The benefits from immunotherapy are all gained in the first 2 years.    

I blogged about my experiences.  There's downs and neutrals, but I think it's quite upbeat,   here.  Have you thought about a blog?  I found it really helpful to record my experiences.  Sometimes I go back and read one and I find it funny, because I remember the anguish at the time.  I guarantee you won't always feel this upset about it.  At some point you will turn a corner.  Stage 4 is about living with cancer.  

 Living with incurable cancer forum - patients only  

There's two groups on here for stage 4 people, the one below and another one for friends and family, similar name.  We have a laugh, despite our diagnosis.  There are many people who have had a stage 4 diagnosis and are still members 10 years later.  Treatment is always progressing.  Immunotherapy is relatively new <10 years and covid vaccines have helped similar treatment to be developed in the cancer world.  I completed a trial of one, last year (Scancell modi-1 vaccine).  

Good luck and keep us posted.  Friendly bunch of people on all the forums here.  We're here for the ups, the Q&A, the support, or for when "others" are annoying!  Guaranteed if you have a Q, someone else has the answer or been through it before you.  

Hi Si,

Well I’m the husband from above, and hearing yours and others’ replies to this have had me join up. Moreso that our issues are more than a little similar. It’s only after 5 months or so of this, and the obvious downs we’re experiencing that it’s become obvious to us that we need to speak to other people about it and stop burying our heads in the sand, so this forum is going to be an easy little start for me, and a chat booked with Macmillan proper this coming week.

Every little bit of hope from any story adds strength. Thanks for replying to my wife…. It’s now got me signed up too.

Hi M,

As you’ll know, even just offering this short message of support gives good feeling. I’ve had 3 messages from friends this week literally telling me they don’t know what to say, and apologising for that….. my response was simply messaging that shows support and care. 

I genuinely wish you all the very best on this roller coaster we’re on, and I’m sure we’ll see each others messages on these forums for many years to come.

J

Hi Mmum,

Crikey! The positivity I’m feeling from reading actual things from people who are going through it certainly confirms joining these forums and groups will be helpful. We used to think we didn’t need to join anything, we had each other and a good family/friend support network, including some who’d been on the cancer journey. But it’s clear we do need to talk and read about others so similar. To go from fearing I’ve got months to live, to thinking it’ll be decades, back down to months again…. None us know so early on what’s to come, and I think we’re both coming to terms with that, and the new outlook on life. 
We’re both very positive and upbeat most of the time, so I know we’ll be ok. I’ll spend more time going through the forums and groups over the coming week, and continue getting used to our new normal.

Thanks for responding to Steph, everyone who has, has given us positive food for thought.x

Just noticed your name Tartangirl .  Are you Scottish?  Do you live in Scotland?  There's a few of us here, in Scotland.  My local oncology is the Western in Edinburgh.  Live in Fife (dunfermline). 

Ahh thanks  J got a big smile on my face now  , 

Such lovely words.  Sending hugs and stuff have great evening  .

M

When I read your story I think wow that you have been through so much and still here and have such a positive attitude. Sadly my husband died suddenly and unexpectedly at the age of 53 from a large saddle pulmonary embolism and undiagnosed kidney cancer which was in both kidneys. 12 cm in the right kidney and 4 cm in the left kidney. Both tumors had breach the capsule. My husband was due for a CT scan but I postponed it for 3 days because my husband had started a new job and I didn't know it was a urgent referral. My husband was working the day before. I blame myself because if I hadn't changed his appointment then the blood clot might have been seen and removed and my husband could still be here now having treatment. Something I have to live with along with my grief. I read that a lot of people are living longer with stage 4 kidney Cancer. I had no answers or closure. Sorry to post this and hope your treatment continues to give you a good quality of life. X