SSLC -Chemo with bad heart and an ICD

[Panface]

Hi my Mum has recently been diagnosed with Small Cell Lung Cancer. The cancer was only 1.5cms when first diagnosed but grew by 1cm in just over a week. Within 2 weeks my Mum had 3 x 1hr treatments of Cyber Knife Radiotherapy. This finished just over a week ago. This week we saw the Oncologist. I was surprised when he said he wants her to have Chemotherapy (Etoposide and Cisplatin) as my Mum has a bad heart, thyroid problems, has an ICD fitted to her heart , her lungs are already pretty damaged and she’s very underweight from years of not looking after herself very well. We’d originally been told that she wouldn’t be offered Chemo because they didn’t think she’d be able to cope with it.

Now the Oncologist has given Mum a week to think about it with a view to starting it the week after. It’s such an awful decision to make. He said the radiotherapy could have blasted all the cancer cells but some could still be lurking and the chemo would act like an insurance policy. However there’s no guarantees it won’t have a bad effect on Mums heart or that the cancer wouldn’t reoccur , spread, carry on growing....if there’s any there at all now!

Mums wanting me to help her reach this decision but I just don’t know.

Has anyone got/had any experience like this please?

[Hidden]

If was me i would have both as read is best.

When dealing with stuff of this nature choose is something in short surply.

I would ask about stuff as effective and not as toxic.

If she agree's can hammer out smaller details CANT if refuse

Sounds like doctors want best outcome and are being proactive in my opinon.

[Hidden]

What is prognosis like without it?

Isn't that type of chemo done over a 2/3 week cycle?

[Panface in reply to Hidden]

They haven’t said, I guess because they don’t know as Mum hasn’t had a scan done since the Cyber Knife Radiotherapy which finished a week ago. They said they won’t scan her for 3 months. Before she had the radiotherapy she saw a consultant that said without treatment she’d have a few months at best. However now she’s had the radiotherapy there’s a chance the cancer may have all gone and she’d be having the chemo for nothing.

Her worst fear is if she had the chemo and it left her with no quality of life.

The chemo would be 3 days a week, every 3 weeks for 3 months, so pretty grueling.

[Hidden in reply to Panface]

Yeah that's similar to what I read, a lot of people with my cancer have 4-6 rounds of it.

My advice would be to get into groups on facebook for people with her type of cancer. Patient groups are brilliant. You learn so much from other patients experiences and some of them will have had it done so you can learn from them both positive and negatives to the treatment.

I'm sorry you're going through this. I know how much it sucks. I have cancer in my lungs too but different to your mums. Oral chemo might be on the cards for me down the line but I'm trying to hold off on that as long as possible

Oh and one last thing, if she needs longer than a week to think about it then remember - this is her life. Decisions can't be forced or rushed according to their schedule xxx

[Hidden]

Just checked in some groups im in on fb as I know some NETs patients have had it. They have it for 3 days every 3 weeks (not sure if that is standard). Some have had great results on it but a lot talk about neuropathy that is still present months after they've finished it. Have also read a lot of people are too sick to finish the full rounds of it. A few of them have reported tinnitus and hearing loss and one woman said it destroyed her husbands kidney function by 50%. But to counter that, I've just read stories that some patients have had 90% reduction in tumour bulk and some are showing clear on scans.

It's such a hard decision. It's going to be hard on your mums body. Almost everyone has said that it's very very hard on the body. I would find out risk of recurrence and prognosis without it and if it's possible to monitor for awhile before starting it. Also ask if there are any other options

Good luck xx

[Panface in reply to Hidden]

Thank you so much for your reply and for looking into it.

It is so hard to know what to do for the best. I desperately want my Mum to have every chance of beating this or of us having her well for longer. However not at any cost. Her lungs are already damaged, her heart not good, she is only 66 but already looks haggard. I just can’t see her being able to get through chemo but perhaps I’m wrong.

[Hidden in reply to Panface]

Gosh no not at all. I've seen it mentioned in the patient groups I'm in for people with high grade NETs. It's a hard decision to make. Have ye looked into cannibis oil at all?

[Panface in reply to Hidden]

Yes I have but it can effect the heart rate and Mum has an ICD which shocks the heart if it goes out of rhythm so it’s not an option for her sadly.

I hope you are well at the moment xx

[Hidden in reply to Panface]

I started injections to try slow my cancer down but they're killing me. Awful side effects but I keep telling myself it's what I have to do to try be around for my 2 year old xx

[Panface in reply to Hidden]

I really feel for you. It must be very scary for you and especially being as you have a young child. I hope the benefits of the injections will outweigh how they are making you feel xx

[Suz01]

Hello Panface. Has the immunotherapy drug Keytruda been mentioned as a possible treatment?

[Panface in reply to Suz01]

No it hasn’t . I shall read up on it . Thank you xxx

[Lindy-loo1949]

I just finished a series called "Chris beat cancer". Try going on you tube and look him up. It is very impressive! He has been cancer free for 12 years...

[Lindy-loo1949]

I am sorry to hear that she and you are going through this. It has to be extremely stressful for both of you. One thing I do know is sugar feeds cancer so hopefully she can cut down or stop it all together. Blessings x Lindy loo.

[Panface]

Thank you. I will definitely watch it. Interesting how you mentioned sugar as I’ve just started reading up on food and what’s best and what isn’t . My Mums not a great fan of anything sweet anyway but I know even in savory things there’s a lot of hidden sugar. I’m trying to find things to help her put on weight as she is painfully thin. It’s hard as she has no appetite and can only eat very little. The drinks they do to put on weight she doesn’t like.

[Lindy-loo1949 in reply to Panface]

Milk shakes with loads of cream and ice cream.