Dad has Nsclc Sq: Hello my dad was... - The Roy Castle Lu...

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Dad has Nsclc Sq

Millisa profile image
13 Replies

Hello my dad was diagnosed in June with lung cancer. He started chemo gem/Cisp and is half wY through treatment. The plan was 2-3 cycles of chemo followed by upper left lung removal. T1 N2 M0. Just had first X-ray to see how things are going to be told no change in tumour size! Dad was devastated. Dads stil loosing a lot of weight and now getting pain on left side when lying down and taking deep breaths. Is this getting worse? Is chemo not working? So worried at this point xx

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Millisa profile image
Millisa
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13 Replies
jujuju profile image
jujuju

Hi I don't really know the answer to this. How many cycles has he had? Are they still giving him more chemo?You need to find out the answers from his oncologist. I don't know about the pain in his side. I doubt anyone but his oncologist can answer your questions. I understand you are worried , he or someone needs to ask.

Best wishes

Julie

Millisa profile image
Millisa in reply to jujuju

Thank you for your reply. Dad has had 2 cycles still to have his 3rd but was told if the 1st and 2nd didn't do anything probably the 3rd won't either! Dads back in hospital tomorrow to start the 3rd. X

jujuju profile image
jujuju in reply to Millisa

I hope it works for him. Hopefully they will make nivolumab available again (the immunotherapy drug approived for squamous) My oncologist thinks they will. It was only available fro a couple of days before it was withdrawn due to the cost. Ask his oncologist about that too.

Best wishes

Julie

Millisa profile image
Millisa in reply to jujuju

I will ask about that, thanks! I'm just so confused as they where do hopeful for my dad and said they where aiming for a cure. X

Scaredlady profile image
Scaredlady in reply to jujuju

According to my oncologist invumolab won't be being wheeled out because of the cost. Next stage was trailing for nscl & that was what I was interested in. I wouldn't qualify for a number of reasons anyway & that is when he told me that it won't be taken up by NHS anyway. Could be wrong as I consider this once a useless Pratt. I find it totally frustrating, that all this money & effort is expended in drug trials that are too expensive for NHS. What is the point?

Laura.

Hi Millisa,

Sorry to hear about your Dad's situation ,I had chemo after surgery completed at the end of July .It was initially cystaplatin/vinerabaline then due to side effects the regime changed from cystaplatin to carboplatin .All I can say is whilst receiving the chemo I had pain around my lung area associated with the op site ,so I think when the chemo is doing something it is uncomfortable .I too had T2N2mx .They may well review the type of chemo your Dad is having ,but I suppose until it is biopsied they can not be sure which type of cancer it is .Hopefully in a while this part will be behind your Dad and it will shrink the tumour when it needs too making the operation easier .Wishing you well .Diane

Millisa profile image
Millisa in reply to

Hello, thank you for your reply. Dad has Squomaus cell (think that's how you spell it) can I ask how long ago did you have your operation? X

Hi ,I had an upper right lobectomy 22nd march for adenocarcinoma ,they have told me that I have a good chance of a cure ,after that I had 4cycles of adjuvant chemo .that was over the summer and I am now just picking up and feeling like my former self so even though your Dad feels rubbish right now and will do for a few months ,tell him he will get better things will improve ,just hang on in there its horrid treatment .Diane

Millisa profile image
Millisa in reply to

I think at the minute Dad feels as though the treatment isn't working! Thank you Diane x

Hi Mellissa, your dads team need to reassess his situation at the moment because of his loss of weight and pain. These can all be caused by the chemo working on the cancer cell. Your dads stats show 1 tumour 2 nodes involvement and 0 metatstes, which is not as late a stage as most of us, and when surgery is recommended then the main aim is to cure. I had a similar prognosis 4 years ago and if you click on my picture you can read about my story along the way.

You should phone your dads LCN and discuss the latest medical concerns with to try and ensure the best outcome. My understanding is that chemo is mainly to prevent the cancer cells spreading further from the original and if the tumour shrinks then it's a bonus ball.

Julie a Diane give good advice.

Stay strong Rab

Millisa profile image
Millisa in reply to

Hello Rab, thank you for the re-assurance! The lung tumour was never really the main concern it was the lymph node in the chest that they wanted to shrink before surgery as it is close to the heart. Is it possible that the lymph node has shrunk if the tumour hasn't??

Millisia Hi, it's difficult to say about the possible node reduction because as you will hear many times on this site that we all react in different ways to very similar treatment protocols. I'm assuming that your dad has had a CT scan prior to the start of treatment and I personally think that comparing CT scans give a far cleare picture, although I do know that different specialists may come to slightly different results. After my chemo earlier this year my main tumour had shrunk slightly but the lymph node had grown slightly.

You say your dad will be going in for his 3rd round today, can you perhaps phone ahead and arrange to speak to his LCN as most of these nurses are well informed. It may be that he can have some radiotherapy to reduce his node near the heart, I'm no expert but if you keep asking then usually a way forward can be found.

Good luck for today

Rab

Millisa profile image
Millisa in reply to

Yes dad had a CT and also a chest X-ray that wasn't very clear so we are waiting on an appointment for another CT. Dads only 56 and other than the type 2 diabetes has no other serious illness. I will speak to the lung nurse today when we take dad for his chemo. Thank you for you help. Take care, Millisa

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