Still No Treatment for SCLC

[Emkins]

I posted on here ages ago, with the sad diagnosis of my mum’s sclc. Due to several administrative errors, she still hasn’t started treatment and it’s now gone from stage 3a for stage 4.

It started as what looked like a ‘nodule’ to now half of her left lung.... I just don’t know how this has happened and it’s too advanced for radiotherapy.

She’s hopefully starting Carboplatin and etoposide this week, but now has a cold. It’s all so upsetting and frustrating. Does this chemo even work? Is it going to be hell? Should we just not take it? They’ve let it get so far now 😞

[Babydolltina]

Emkins its me again. My wife is on the same combo. I dont know how it works but will message you later

[Emkins in reply to Babydolltina]

Thanks so much

[Babydolltina in reply to Emkins]

Emkins Hi. The Carboplatin and Etopiside are strong. They are knocking the stuffing out of my wife. They will give you 3 days of tabs to go home with, anti biotics and steroids. Make sure that you get the white cell booster also. Take the antibiotics a week after the I.V. chemo and things will work out ok. The white cell booster is for after the chemo tabs finish. They forgot to give them my wife and she ended up Nutropenic and had a hospital stay.

God Bless to your mom and any more help you need just ask.

J

[Emkins in reply to Babydolltina]

Yes I gather it’s really strong stuff and dreading the effects, but praying it blasts it also.

Did your wife lose her hair? And is it having any effect on the cancer? Sorry for all the questions xx

[Babydolltina in reply to Emkins]

Emkins. Just been today for an appointment and an xray was ordered due to a new wheeze. The tumor is showing signs of shrinking so Etopiside must be working. And yes her hair went just before the second cycle. Food will also taste like metal. Chin up and be brave. It must and will work for your mom.

[Emkins in reply to Babydolltina]

That’s great news re shrinkage! Will be brave and as positive as can be. Thinking of III both too

[Babydolltina in reply to Emkins]

Emkins just remember 'if you give up what hope does your mom have?' stay positive because there is light at the end of the tunnel.

J

[Emkins in reply to Babydolltina]

My mom had an awful reaction to Etopiside, so now scared we now don’t have that option anymore

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Emkins,

Your frustration is understandable .Hopefully once your mum’s cold is better she will be able to start treatment.

Small cell lung cancer responds very well to chemotherapy drugs such as carboplatin and etoposide. These drugs destroy quickly dividing cancer cells.

More information about the drugs are available from Cancer Research UK at

cancerresearchuk.org/about-...

Kind regards,

All the team at the Roy Castle nurse led Helpline

[Emkins]

Thanks so much - fingers crossed it blasts the cancer and not her too much! I gather it’s very strong.

Appreciate your positivity - thank you

[JanetteR57]

sorry to read of your fears and concerns for your mum. It can be very frightening and the internet if you go exploring is woefully out of date. There are thousands of patients living with advanced lung cancer in a treatable but not curable situation and many who are caught earlier who have treatments with 'curative intent'. My own diagnosis was 8 years ago in January. In the last 4-5 years I've become very involved in lung cancer research and attend conferences where international updates are given. The landscape for lung cancer treatment has changed beyond recognition but unfortunately the internet hasn't caught up. Many do tolerate the treatment - as somebody else has said, if it's refused, then there isn't the same level of hope. I've met many patients who were told they wouldn't live long but on new treatments at the time survived several years and then when it stopped working, by then there was a new treatment had come along. That's how it's been in the last few years with changes in every type of treatment for lung cancer and also changes in the order treatments are given as well as the doses. Somebody who had harsh chemo 10 years ago for example may now be offered quite different treatment based on their tumour's biology and their own genomic make - up that have only appeared on the scene in the last few years. There is some really helpful information available on Roy Castle website under 'how we help', 'information', lung cancer treatments'. I'd also recommend speaking to the clinical team treating the patient as we are all different and there are many different types of lung cancer as well as many different combinations of tumour biology/burden within patients. Good luck.

[Nimrod2]

My husband had SCLC as well. He had chemo last year with those 2 treatments. Did reduce the tumour. Also had radiotherapy. Now 6 months from end of that treatment and the cancer is still active but hasnt spread.

[Mustapha-f]

Dear emkins , my father had NSCl I he had carpoblatin and alimta at first , it didn’t work so far ,after that he did radiology .. and at the end he changed to immunotherapy .. which was perfect and we had reduction of disease and tumors were almost non active .

Look for the immunotherapy such as (Opdivo ) consult you doctor and search after it ..

God bless you and your mom