My Journey

Hi all,

I have been reading posts here since my diagnosis at the end of July, but have not participated in any of the discussions, even though I have been very moved by all of your stories and send my love and best wishes to each and every one of you who are fighting or caring for someone with this awful disease.

I was diagnosed with sclc extensive on July 26 this year, with ct scan showing bilateral lung mets, a 7.2cm right upper lobe mass with mediastinal, hilar and subcarinal lymphadenopathy and a left frontal cerebral met to brain...........

I was started on chemo on 31st July (the day before my 54th birthday) Cisplatin and Etoposide for four rounds, I was also taking Dexamethasone and came through it all reasonably well, plenty of side effects......completely bald within two weeks, joint pain, sleeplesness, fatigue etc but in the main coped reasonably ok.

My initial prognosis was 6-9months so was disappointed last week when I was told my prog is now 10 months, so thats after going through 3months of hell to get an extra month!!!!!!!

On Monday I am beginning WBR for 5 days, I am really scared about this, does anyone have any advice on how to deal with the side effects of WBR?

xxx

8 Replies

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  • Hey chipmonk,

    thanks for sharing your story and my heart really does go out to you. Your story is just so similar to my mum's - as I posted only recently. I hope you have got folks around you to help you through the difficult parts.

    I can't offer any advice on WBR - which was your question. My mum has prophylactic cranial irradiation to come. Have you also had a look at the inspire.com lung cancer survivors website? it's probably better to ask your question there.

    Also, have you ever though about trying alternative therapies? my mum also took cisplatin and etoposide and I gave her curcumin and EGCG as well. This MAY have helped as she has surpassed the doc's expectations massively.

    All the best!

    Xysia

  • Hello Chipmonk, so very sad to hear your story but wish you the very best for your forthcoming treatment. You come across as a positive, strong individual who is willing to fight this awful disease. Fear of the new treatment I'm sure is natural, I too am very afraid everytime the oncologist suggests something new for me. Please let us know how things go for you.

    Wishing you all the very best, take care, Tallulah xxx

  • Hi Xysia and Lulla,

    Thank you so much for your replies.

    Xysia, I did read your mums story and I send her and you my love and support throughout this nightmare, I have already ordered the curcumin so many thanks for that.

    Lulla yes I am very positive and have a great support network of family and friends helping me. Thank you so much and yes I will let you know how I get on. I wish you too all the very best in your battle.

    lots of love and positive vibes

    xxx

  • Ps Something I forgot to mention about my condition I was told last week I now have pericardial effusion (fluid around the heart), Does anyone have experience of this condition?

    Thanks Debs x

  • Hi chipmonk,

    So very sorry to hear your story, but wishing you the very best!

    I was diagnosed with Pericarditis before I found out about my nsclc on July 2nd.

    They thought it was caused by an infection. I was told to rest for two weeks and it would go away. But it didn't. I went to my general doctor and he gave me aspirin to take for ten days, again things didn't improve. But then they found my lung cancer and this is what caused my pericarditis. This seems to have improved since I started on Iressa four months ago. I am still waiting on an appointment to see my cardigolist.

    Sending you best wishes along with an awful lot of positiveness. X

  • Hi Chipmonk,

    I am sorry I don't have any advise on WBR, but read your story and just wanted to say my heart aches for you and I wish you the strength to fight this horrible disease. I agree with Xysia look at Inspire.com too, it is very active and you will get lots of support and advice there too.

    Try not to think about the prognosis, I think it is quite unusual today to give one, because treatments are developing all the time, and every person responds differently to treatment. When I asked about my husband's prognosis the doctors wouldn't give one - they told me it had made fools of them too often, people were living long beyond the period they were given, and you will find many of those here and on Inspire.

    Take carex

  • Hi Chipmonk,

    so sorry about your diagnosis but glad you had the strength to tell us your story. No experience of WBR or pericardial effusion, I'm NSCLC and on Iressa. I will say though that no one can give you an expiry date. Many are living much longer than they were told to expect. I met a man last year who had SCLC and he told me they gave him 3 months that was now 7 years ago!

    Stay positive and as active as you can, they are the things the survivors have in common.

    Wishinhg you all the very best throughout your journey.

    Lyn x

  • Hello you lovely kind people,

    Thank you all so much for the replies. I am staying very positive and throughout I have been reasonably well.

    I started WBR on Monday and seem to be coping with this ok so far,

    I am being sent for another echocardiogram next week to see if the fluid has increased at all and if it has will have an operation called a pericardial window.

    I wish you all the best in this battle

    Love Debs x

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