Newbie and scared: Hello all We found... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Newbie and scared

Jadav
Jadav

Hello all

We found out yesterday partner as lung and bone spread, had tonsil cancer which he has finished chemo and radio in July, also area on tongue now showing, devastated isn’t in it and I can’t stop crying. We have 6 year old twins after 6 ivf goes and just moved in the middle of everything to dream cottage hoping everything would be ok.

Can’t bear to see him upset and worried for my own health and anxiety.

Sorry not much positive, just need to reach out. Watched my mum and dad pass with cancer and now it’s hit me hard

20 Replies
oldestnewest

Oh Jadav, I am so sorry to hear this. You must be beside yourself. It must be desperately hard..... worrying about your partner worrying ..... trying to keep it together for the kids and being scared about what the future holds.

I have no answers, but I hope you find some support on here.

Sending much love to you all

xx 💗 xx

Jadav
Jadav in reply to KittySp

Thank you for your reply and love I am sure I will find lots of support here x

Sorry I have no answers but just wanted to send love and you are not alone xx

Thank you for your reply they allHelp

I'm so sorry to see this, I think it would be really good if you could get some counselling, this is alot for you all to deal with right now, if you are also really anxious speak to your doctor about some mild medication perhaps just to take the edge off of things and help you cope. Such a hard time for you and your family right now and sending you a virtual hug. xx

Jadav
Jadav in reply to DaisyFlower06

Thank you for your reply, yes I spoke with nurse Friday she has a made a referral I think for support, I willAlso ring my doctor tomorrow to ask, I take medication already for past year due to anxiety etc but not helping at the moment, will speak with doctor tomorrow hopefully thank you xx

So so sorry to read your post. Please be kind to yourself, speak to your doctor who should be able to prescribe you mild antidepressants. Have you got a palliative nurse or Marie Curie were amazing when I needed help, Sending love & a virtual hug

Just wondered if your partner has been tested for mutations, as this might affect the treatment options offered to him

Jadav
Jadav in reply to Bow-19

Hi no tests as yet, just hope they willTry everything. Thank you for reply x

Bow-19
Bow-19 in reply to Jadav

Worth asking of they have tested for EGFR, ALK and ROS1 mutations plus others too. Young people often have mutations some which are treatable with targeted tablets.

Is he treated by a Medical Oncologist or a Clinical Oncologist? Do they specialise in Lung Cancer?

Jadav
Jadav in reply to Bow-19

At the moment we only got told fri they were expecting an all clear scan as he went though 6 weeks of daily chemo and radio during the summer for tonsil cancer which has all gone, but now appears on tongue which is strange as he said he would treat tongue at the same time. So until the tongue issue is looked at they will then look at other spots, we are with head neck oncologist at present but he said he prob transfer to another oncologist x

Bow-19
Bow-19 in reply to Jadav

Thinking of you. It’s so difficult in the early stages when you don’t know what you are dealing with and have to have lots of tests and investigations going on. Hope you find out more soon x

So sorry to your going through this, I can't offer any help but I can offer an ear if you need it. Sending love and hugs xxx

Jadav
Jadav in reply to Eglingham

Thank you think I willNeed all the ears and virtual hugs I can get x

I’m so sorry, your partner has been as been through so much already this news must be absolutely devastating to you both.

Have they done a biopsy to check exactly what cancer it is and to test for genetic bio markers?

I hope they get moving quickly and start treatment to get rid of the cancer.

My dad has stage 4 Squamous Cell Carcinoma that has spread to bones and adrenal gland and he’s having chemotherapy Carboplatin and Paclitaxel and immunotherapy drug Pembrolizumab. He will also be stating Denosumab which is a Bisphosphonate to help protect his bones from further damage (mention having that to your partners oncologist).

My dad broke his femur 5 days after his 1st cycle of treatment and they discovered his femur has been weakened by the cancer. He had surgery to put a rod and pins in from his hip to his knee and will be having radiotherapy on it in a couple of weeks.

The NHS have been amazing for my dad and we are so thankful they are continuing treatment because he wants to fight this awful disease.

Myself and my mom have gone on low dose antidepressants to help with our anxiety and it is helping. Make sure you contact your GP to get help for both of you if you need help to mentally cope with all this. My dads been on sleeping tablets since he was diagnosed.

Sending you both love and strength and big hugs to get through this xxx

Jadav
Jadav in reply to simlut

Many thanks for your kind reply. It’s heart warming to know things can be done to make it easier, no biopsy as yet as early stages and they need to look at tongue first as they are surprised it has shown up, when we thought everything finally getting better and life can move on. I am on mild tablets for anxiety since a year but I will speak with doctor tomorrow and try and increase also will speak with partners doctor as I think he needs something stronger, not too bad sleeping but waking in night upset etc. Still getting over the tonsil treatment which was extremely hard and weight lost, now all this to contend with.. hopefully over the coming weeks we can get more positive news it’s about time. Thank you and hope your dad keeps on his positive fight. Trying not to cry today xxx

simlut
simlut in reply to Jadav

You have both been through so much already, I really hope you start getting more positive news xxx

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear JadavSo very sorry to hear about your partner and how immensely difficult this must be for you all. You have a lot to cope with and this must be such an emotional roller coaster for you, make sure you surround yourself with family and friends.

There have been some comforting replies on the forum for you and it is a great place to offload and find support.

Feeling isolated in this is very common and there is support there for you both , which you could discuss with your GP.

You may know of this charity already but if not this provides information, support and advice for those with any form of mouth cancer: mouthcancerfoundation.org/

We have lots of information on our website on lung cancer and spread to the bone: roycastle.org/app/uploads/2...

and all our information booklets can be found here:

roycastle.org/help-and-supp...

There are new treatments for lung cancer, and for those with spread to another organ, these drugs are called Immunotherapies and Targeted therapies, but this is dependent on certain cell mutations/proteins present in their biopsy, which has been mentioned in some of your replies. Although these drugs are not a cure, they have the potential to lengthen life and can have more manageable side effects for some.

We have a new service called 'Keep in touch' where one of our dedicated team members telephone or email you once a week to provide support and a chat, if you are interested in this you can register through this link: roycastle.org/covid-19/info...

If there is anything you would like to discuss you can either email us at lungcancerhelp@roycastle.org or you can telephone our freephone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

Thank you for reply very helpfulWe had some slight positive news today the tongue is clear after being checked, so whatever was on pet scan may of been scaring. Now onto the bone and lung shows, hopefully hospital will be in contact soon.

I will Indeed join the email list

Thank you

Jane

RoyCastleHelpline
RoyCastleHelplineAdministrator in reply to Jadav

Dear JaneThat is good news indeed, thank you for letting us know. Hope all goes well with the remaining scans, please do not hesitate to contact us if you need to discuss anything at anytime.

Ask the nurse helpline 0800 358 7200/ lungcancerhelp@roycastle.org

All the very best to you both

The Roy Castle Support Team

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