Will my left leg ever work again

[Tike3]

Diagnosed in August NSCLC Stage 4 about 4 months after noticed difficulty walking on left leg, just after diagnosed with a few small brain mets which were treated successfully but still haven't got use out of my leg. Recent brain scan showed small mets on other side apart from my left left I have become unbalanced and have the tendency to lurch backward I see my consultant soon and scared to death she will say this is the end and even if it's not I will never walk again. How cruel is this disease not only kills you off but ruins your quality of life in the meantime. Surely in this day with a medical advancement there would be help for me to walk a bit.

[Beatless]

Tike3, Yes it's very hard, but you must keep trying, every day, just try to walk a few steps most to keep trying

All the best

John

[Tike3 in reply to Beatless]

Thanks John I've seen some leg exercises on YouTube do you think they may help has yours improved, I fell over the other day inside the house, couldn't for one minute go out, so recluse as well!

It helps to know help and support is here on the forum and your not on your own

Best wishes John

[Danni54]

Hi. I so agree with you about how cruel this disease is . You are so wonderful as are many people here and I will write more tomorrow as I have had 2 night's of being sick and up all night so think I have another infection which will make it the 6th. More tomorrow but I just wanted to let you know that I am thinking of you . I am so sorry that you are going through this and are having such a bad time. I can see that you are feeling scared and down but I am here for you and I'm sure that everybody here is also thinking of and supporting you. Please let us know how you get on . My right leg has started to give way , occasionally, so I understand a bit, how you are feeling.

I hope that you manage to sleep.

Love and gentle hugs,

Danni xxx

[Tike3 in reply to Danni54]

Like you Danni I'm tired and will message tomorrow, we all support one another which is a great help.

Hope you feel better tomorrow

Pam

[Danni54 in reply to Tike3]

Hi Pam. How are you ? It's 2 a.m. and I'm up and going through the sickness again so I thought that writing might take my mind off it for a few minutes! I'm sitting here watching YouTube and a band called Dead South and a song called Broken Cowboy!! They make me smile with some of their video's! I lie in bed listening to YouTube and it's just as well that I love music because my husband is a drummer in a rock band and has been drumming since we first met 39 year's ago! What happens to time that it goes by so quickly?! Now I'm waffling!I still haven't had the results from the last time I was sick but it's the same so I know that it's a lung infection. I didn't ever have this when I had the tumour and it's exhausting! My throat is burning and I'm so tired and tired of fighting to have treatment. I read some of the other post's and I so agree that you need to be seen soon and start treatment. I also saw that Seaspray goes to the Mayo Clinic and I think that their website is great for information and it has taught me a lot. Thank you to them.

Please let us know how you get on and I'm thinking of you. You are amazing as are the people on this forum but also friend's and family who are going through this too. Take care and take strength from knowing how many people here care about you.

Love and hugs,

Danni xx

[Seaspray298]

You need to see your Radiologist right away. They should be zapping those recent Mets while they are small. You might also have some swelling going on in which steroids would be used. I had brain Mets zapped twice in one year. You will get better!!!

[Tike3 in reply to Seaspray298]

Thanks Seaspray your always reassuring. I'm seen on the 8th June, well I'm hoping seen and not a phone call for CT scan of thorax abdomen and pelvis don't want over the phone. Wish they would start on these mets. Been told they're tiny. You seem to be doing amazingly well. Keep doing what you're doing on here because you are a great support to many. Thank you

[Seaspray298 in reply to Tike3]

I had my CT today. Went without the contrast you drink but had the contrast through the veins. Was told there is a nationwide shortage of oral contrast. Wonder if it is just here in the US. I hope you get your results quickly and can get those brain Mets radiated so you can get on a systemic drug. What mutations do you have?

[Tike3 in reply to Seaspray298]

I had my CT scan of thorax abdomen and pelvis on Monday put contrast through PIC Line. Don't know about shortage of oral contrast I'll see if I can find out and let you know. Just feel like brain mets should be an urgency, I suppose it is only 2 weeks since brain scan which discovered the new ones on opposite side as the other 3 which were dealt with in December.

I'm presuming they are collecting all results and will make next decision. Oh, I don't know what mutation I have, how do I find out. I'm with Christie's in Manchester, who ate you under. You seem to be doing very well.

Thinking of you and wishing you well.

Pam

[Seaspray298 in reply to Tike3]

Mutations are found out with a biopsy. That is how they know if you can be on targeted therapy. I would think they would have you scheduled quickly for those brain Mets to be radiated. Perhaps a phone call or note on the portal (if you have one) could push things along.Just had my CT scan and I am back to stable! Waiting for my infusion now of immunotherapy. I am in Florida in the US at a hospital called Mayo Clinic.

[sassassas in reply to Seaspray298]

that's fantastic news Seaspray298 . Really pleased for you 💜

[Seaspray298 in reply to sassassas]

Thanks sassassas! 😘

[Tike3 in reply to Seaspray298]

Only one word for it .....fantastic 😘

[Denzie]

Until the swelling goes down in the brain you won’t know for certain the extent of the damage.

Request occupational therapy to strengthen the muscles in both legs and strategies for balance and to overcome that lurching.

Please let us know what you learn on the 6th CB

[Tike3 in reply to Denzie]

Thank Denzie Hope you are ok. I just think something should have been done by now or do they stabilise and not grow so quickly. I don't know enough about brain mets will they not grow into one big tumour. My other concern is I'm not on any steroids, but I'm on Epilim for fits, hadn't had any fits.

Thanks Denzie for your support and I will let you know how I get on. Since your diagnosis you seem to be involved in all kinds of support groups etc, that's very selfless after what you went through. My husband went last week to the Galleri Trial. Quite a simple procedure, usual consent forms, 50% of blood's taken are kept back for future investigations and the rest sent to US.

Pam

[Denzie]

I wish I knew a lot more about brain mets than I do. The brain is such a complicated organ, I can only imagine how difficult it is to study it. My mom had brain mets with her lung cancer but I never did.

Tell your husband thank you for me. The research they will be doing is so important.

[Tike3 in reply to Denzie]

Will do Denzie, the sooner we find a cure the better, but I don't think it will be as simple as that. You and many others like you are putting it out there and we thank you for that. Medical science has come a long way.Take care

Pam

[Beatless]

Tike & Others, My problem is RHS, I'm using a walker to get around but very slowly & with care. The brain tumour is 19*23 mm, is that big? Going to see Oncologist on 8th June for mask fitting, have also been told supply problems on Contrast solution.

Due to start Brain Radiotherapy on 16th June.

Just wish I could get more use out of right leg, I'm on Demoxifine but it does not appear to help.

Any ideas considered!

[Beatless]

PS, any idea of number of Brain sessions I will have?

[Seaspray298 in reply to Beatless]

Beatles, are you having WBR or SBRT radiation? Whole brain is many sessions. When I had Gamma Knife it was one session. Having the mask made is a weird thing but you will get through it. Then you get to take it home as a trophy!!

[Beatless in reply to Seaspray298]

Seaspray, Think Whole Brain a I've been turned down for Stereotactic

[Seaspray298 in reply to Beatless]

Bummer..but you will get through it and put it behind you! I will be cheering you on!

[Beatless]

Seaspray, Yes it iis, but I will win!

[Beatless]

Any idea number f Brain Radiotherapy for WB treatment?

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Beatless]

Hi Beatless

Whole brain radiotherapy can be 10-15 treatments over 1-2 weeks. It may depend on the treatment schedule that your oncologist/radiologist has decided upon.

Hope it goes well for you and if there is anything else you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[Tike3 in reply to Beatless]

Will they offer me brain radiotherapy Beatless, what's WB. I'm desperate to live a bit longer,

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Tike3

You have received some wonderful replies of which there is not much to add to.

You may find it helpful to use a walking aid, either stick or zimmer frame to stabilise and support your upper body to help with your walking and balance. You may have this already, but if not you could either speak to your lung cancer nurse specialist or GP to request, and be assessed for one. Priority is to prevent any more falls and do let them know that this has happened already.

It is good you have the appointment this week and your symptoms can be reassessed.

If you have any worsening of symptoms or change, let them know prior to the appointment.

If there is anything else you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

All the very best

The Roy Castle Support Team

[Beatless in reply to RoyCastleHelpline]

Tike, It's good to have physical & mental support, & good to have the forum for additional support

Keep going!

[Tike3 in reply to RoyCastleHelpline]

Hello

Will they probably offer me radiotherapy again like they did for the two on the other side or will they say nothing can be done.

Thanks

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Here is the link to our booklet on brain metastases: roycastle.org/app/uploads/2...

Kind regards

The Roy Castle Support Team

[Tike3 in reply to RoyCastleHelpline]

Thank you it's very informative. I go on Wednesday to see consultant I'll let you have know then, I'm scared stiff they'll say nothing can be done

[Beatless]

Tike, suggest phone sec. of your Oncologist & ask what they can do for you, WB, is Whole Brain scanning, will it help I do not know, but suggest ask.

[Tike3 in reply to Beatless]

I've had a whole brain scan and get results on Wednesday, I'll let you know how I get on, do they ever say nothing can be done.Thanks

[sassassas in reply to Tike3]

Hi Tike3 I'm sure you will be offered radiotherapy, especially as you were able to have the small ones on the other side done. Many people have it many times. Sometimes, patients themselves don't want any further treatment which is one reason treatment may be stopped - you very clearly do! Its so hard just waiting for these appointments isn't it. Sarah x

[Tike3 in reply to sassassas]

Thanks Sarah for always being here. I'm sure they will offer radiotherapy but I'm unsure how it goes if you've had it once but think that is if its on same side.How is your husband doing, I think of you.

Sending love

Pam

[Seaspray298 in reply to Tike3]

Sending you best wishes for Wed! I know people who have had over 20 brain Mets zapped at different times! I have had 8 tiny ones done so I am hoping this will be used in your case. Let us know!!

[Tike3 in reply to Seaspray298]

Thanks Seaspray your an inspiration to all and you lift me up. If someone has 20 removed I'm sure there's hope for me and you had 8. Think the whole picture will be if it's spread in my thorax and perhaps that changes the outcome, will know tomorrow if it has. How are you are you having treatment at the minute. It's a blasted cruel disease isn't it

[Seaspray298 in reply to Tike3]

It is a "blasted cruel disease" but one can learn to live with it. I had a lesion in my thorax when I was first diagnosed and had it biopsied. Hurt like Hell but that is how I got officially diagnosed. The lesion eventually disappeared as did lesions in my ribs when I did chemo. I recently had the lower part of my spine radiated..the L 5.. No worries, they can hit all of yours and you will be just fine!!! 😀

[Tike3 in reply to Seaspray298]

Gosh, all what you've gone through and you're so determined, I want to shout I'll be the same!! Bet its made you a stronger person in everything you do.Well, the days the day, I'll let you know how it goes.

Sending love and best wishes your way.

Pam

[Tike3 in reply to Seaspray298]

Hi Seaspray How are you.

Got my results today no spread in Thorax, tumour has decreased in size so I'm starting my last 2 chemos next week. I just want to thank you for your support and return my support to you.

Love and best wishes

Pam

[Tike3 in reply to Tike3]

Let me know Beatless I wish you well, the support you have given me has been amazing. I get results tomorrow of all the test's I've had done and of course full brain scan.Sending love

[Seaspray298]

Love the good news!! Sounds like you are "stable"!!! Congratulations on a good scan and thanks for sharing!😘

[Tike3 in reply to Seaspray298]

Thanks Seaspray it means such a difference to get support and love off someone I've never met, it's like we're friends!

[Beatless]

Tike3 Please keep in touch, I believe that communication helps all.

[Tike3 in reply to Beatless]

Yes we need to keep in touch, I don't know what I'd do without this site.Best wishes to you Beatless.

[Ellejayb]

I have just read the whole thread and it’s really uplifting to read - the support out there. Great news about the scan. I wish you a pleasant onward journey - as they say in airports.

[Tike3 in reply to Ellejayb]

Hello Ellejayb

How are you, I can't see a lot about you on you profile but that's ok, just want to wish you and hoping everything going well for you. There's ups and downs, yes my scan was clear but now I've got a problem with top vertebrae which has cancer and causing lots of pain. Have last two chemos on Thursday so may help.

You take care and yes this site is great.

[Ellejayb]

So sorry about your vertebrae and I hope that heals soon. All best. x