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Author Topic: Lung Secondaries  (Read 36859 times)
Hazel
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« Reply #15 on: April 27, 2011, 10:14:18 PM »

Hi Alison
I was interested to see that your tumours weren't picked up immediately too, mine were seen three years ago, two of them one on each lung and they told me they thought they were chest infection scars. Nine months before my diagnosis my mum died and i had a terrible chest infection at the time, her doctor was trying to treat me too, so being told they looked like scars seemed a reasonable supposition. That was Aug 07 then last June a routine blood test when i was being treated at gyny picked up the tumour markers increasing. I had scans in june July Sept and Nov, CT MRI and Pet and another CT. In Nov ironically on the 4th anniversary of mum's death, i was told that the two 'scars' had grown and that there were four more small spots, so this indicated that they were tumours. I have been told that there is a 10 percent chance of them disappearing. So far my markers have decreased quickly which is good. They didn't want to give me Oxaly again as i still have numb feet from the infusions 3 years ago, i had 8 cycles. I had forgotten, but when they removed my PICC for good i was left with a terrible rash too, which felt like a burn, it was completely red over the area that had been covered. But it went completely within a couple of weeks.
The chemo i am on now, Irinotecan{and cape again} has a side effect of increase in saliva and body fluids, like tears etc...i have to have this bloody painful injection with the chemo, atropine to lessen these effects. Chewing gum might help you if you don't mind it?, especially the fruity tasting ones as it stimulates saliva production.
The fact that you have experienced a reduction in tumours is hopeful, mine haven't grown any more, hopefully with the next scan they may have reduced too! Thanks for telling us your experience to hear positive results delivers hope.Good luck too !
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Below is a bit about me and bowel cancer
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« Reply #16 on: April 30, 2011, 09:09:38 AM »

In my experience as both a nurse and a reflexologist, there does seem to be a good case for complementary approaches to help reduce the severity of some side effects ( both acute/short term and chronic/long term) associated with chemotherapy drugs. For the dry mouth problem described by Alisonhelen, for example, both facial reflexology and accupuncture may be able to help to alleviate this particular problem. 

Both disciplines have high standards for professional qualification and registration (which can be checked by the public) and are often used very successfully to support the work of healthcare clinicians in cancer specialist centres across the UK ( e.g. The Christie Hospital in Manchester and the Penny Brohn Centre in Bristol to name but two)

As a general point, you should always ensure that you ask the therapist about their professional qualifications, and their exoerience in treating cancer patients before you commence any treatment with them. You can also ask to see their qualification and professional registration certificates (and appropriate insurance certificates too).
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suze
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« Reply #17 on: May 12, 2011, 05:35:30 PM »

Three years after I was first diagnosed with a tumour in my rectum, radiotherapy & Capecitabine followed by surgery, another 6mths of Capecitabine & two years thinking I had got away with it, I have lung secondaries. 

yes, this happened to me too .. very similar story .... but I also had a big tumour on bowel as a secondary, so that was the surgery priority and they followed up with 6 months of chemo .. and they seemed to GO!

bit nervy to say that as I have another scan soon .. and nerves are running a bit frazzled, to say the least ..
« Last Edit: May 12, 2011, 05:47:25 PM by suze » Logged

Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
Vivienne
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« Reply #18 on: May 18, 2011, 04:59:28 PM »

Well, I should have had my third chemo last Thursday but as I was getting bad diarrhoea it was postponed till this week. Today I went for my pre assessment with the chemo booked for Friday & although the diarrhoea has abated I was badly depressed, weeping & with tight bands around my chest.   The oncologist gave me the option of having a scan before another treatment & I jumped at it.  She said to make an apointment for 3weeks time & hope to get the scan before then.
After I got home the hospital called & asked me to go back tomorrow to have the line removed so I'm assuming that the Drs have decided that whatever the result of the scan I won't have anymore chemo.

Not sure how to feel about that but I think I'm pleased & I'll get the Wii fit out & get ready for surgery!
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Vivienne
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« Reply #19 on: May 28, 2011, 07:19:40 AM »

Doesn't life get interesting when thy start pumping you full of poison!

When I went for my next pre-assesment although my bloods were ok I was so weak from constant diarrhoea that the oncologist suggested we postpone for another week & I take 8 loperamide & 6 codiene a day!  The strange thing was that onc the threat of more chemo was not there the diarrhoea was not so bad & I didn't need to take that much.
The following week I saw a different oncologist & she suggested that we postpone the chemo until after I had a scan to see what was happening, almost no diarrhoea for the next 10 days.
CT scan yesterday & after I got home there is a message on the answerphone to say they had found some blood clots & I had to collect some injection from the pharmacy to be injected into my stomach daily!
It was not a very clear message & I had to call back to ask what it was all about but I finally got a call from the out of hours doc who explained it all to me & on the way gave me the radiologists report on my scan......... there is significant reduction in the size of the tumours, particularly with the one in my left lower lobe! Grin
So a pain finding the blood clots but if they hadn't been there I would be waiting ages for the good news!
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« Reply #20 on: June 05, 2011, 03:10:43 PM »

Hi all

I too have secondary lung and liver mets. I was told that although they were operable, it was not thought to be the best option for me. I agreed with this as had lung surgery the year before to remove a met and the upper lobe of left lung. I asked my oncologist to apply to the Cancer Drug Fund for Avastin and I started the treatment last November. I've had Avastin with Irenotecan and 5fu every two weeks barring a few delays, and have my last one of 12 this week. I was scanned in March and all tumours were starting to shrink, so hopefully they have shrunk even more. It sou ds like a hard chemo regime, but, apart from being really tired for a few days after each treatment, I've been ok. I didn't even lose my hair this time either.

Stay positive everyone, and keep strong............Heather
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Diagnosed in 2007 with stage 4 bowel cancer with liver mets, various ops and chemos. Now have liver and lung mets and am getting Avastin courtesy of the Cancer Drugs Fund together with Irenotecan and 5fu
Hazel
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« Reply #21 on: June 07, 2011, 12:58:35 AM »

Vivienne that is great news about your scan, i just finished my irinotecan and take my last capecitabine on thurs, my scan is booked for the end of June i love to hear stories like yours it makes me hopeful that my lung mets may have reduced, certainly the cea levels have reduced from 41 to 6 at last count. Ostomistic same with you good luck and great news that yours have reduced, don't envy you the irinotecan but it's manageable, i hated the atropine injection with a vengence though!!
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Call the nurses on 08450 719 301
You never know how strong you are until being strong is the only choice you have!
Blogging at http://elkamouri.blogspot.co.uk/
Below is a bit about me and bowel cancer
http://www.beatingbowelcancer.org/forum/index.php/topic,1677.0.html
suze
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« Reply #22 on: June 09, 2011, 08:47:32 AM »

Good news from me too .. my "thickening" / lesion on lung has stayed the same, a year on since last chemo ... oncologist is surprised, to say the least, but I do the anti-cancer diet and exrecise regime, and it seems to be working!  For the first time since I started on this he has actually asked me what I am doing! LOL you know how tunnel vision these guys generally are!   

good luck, y'all
x
x
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Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
Hazel
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« Reply #23 on: June 09, 2011, 02:11:51 PM »

Suze that is really inspiring, i have to say exercise and eating wise i am rubbish. Now that i just took by last capecitabine this morning hurrah!!!!! i will look into getting and exercise regieme going now my body can start to recoveer from the last 6 months of chemo. Eating wise i need to get on it straight away sound like i need to!
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Call the nurses on 08450 719 301
You never know how strong you are until being strong is the only choice you have!
Blogging at http://elkamouri.blogspot.co.uk/
Below is a bit about me and bowel cancer
http://www.beatingbowelcancer.org/forum/index.php/topic,1677.0.html
suze
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« Reply #24 on: June 09, 2011, 05:52:52 PM »

I am a bit of a missionary for the anti-cancer book  .. because if nothing else, there is evidnece that believing you are helping yourself actually DOES help you ... so it is win-win in my eyes!
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Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
Vivienne
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« Reply #25 on: June 10, 2011, 07:47:28 AM »

Hello Suze, I don't think we have met. I don't know about this book you refer to but I do believe in PMA. I am a Healer & I have a whole army of Healers both trained & untrained working on me. I know that we will beat this damned disease.

Well done Hazel, as you know the next week is likely to be a bit of a bu**er but you will come through it & I'm sure your tumours have, like mine, significantly reduced in size.
I refused the 'clexane' last week, I hate this taking one drug to combat the effects of the first & then havng to take another to combat the effects of that one.
On Tuesday I saw the consultant oncologist & had a long chat. Seems it wasn't just me who thought my reaction to the chemo was bad, they have decided not to give me anymore but I have had to give in & turn my belly into a pin cushion for the 'clexane'. I am waiting now for an appointment with surgeons in Bristol who are trialing different ways of dealing with lung mets. One way which sounds very exciting & I hope I'm suitable for is 'radiofrequency ablation' or RFA.
I have to have another scan & see the cosultant in 3 months so I should see the surgeons before then.
In the meantime as I say I have a whole army of Healers thinking shrinking thoughts for the tumours & dispersal for the clots.  Sending Healing Thoughts for all of you. xx
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« Reply #26 on: June 10, 2011, 08:13:45 AM »

Hiya Vivienne .. I have written a lot of notes based on the Anti-cancer book, so you can get an idea of whta it is like from looking at my forum ... the first thread in here gives links to the book, and a bit of detail ..

http://suzeforum.proboards.com/index.cgi?board=anticancer&page=1

I made this forum mainly as a way of making my own notes so that I can quickly refresh my memory of main points, and keep good recipes etc ... but it is open to anyone to join and get involved if they so wish ... or just to read if they want to ...  it's not cranky and it is working for me, so I feel happy to recommend it more each time I go for a scan and don't need to go back for treatment .. it's a year now and three scans where nothing new has started and lung met has stayed the same ... worth a look in anyone's terms ...
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Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
alisonhelen
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« Reply #27 on: June 10, 2011, 05:17:53 PM »

Hi All, Suze I'm so glad to hear your good news, it gives us all hope that we too will hear the news we want. Hazel good luck for the end of June and I guess you get to see your Oncologist soon after that. I have my scan on June 22nd and get to see my oncologist on July 6th. In January after 3 cycles of chemo I was told that I had lots of mets on my lungs and liver after being told initially in October that I was having chemo only for preventative treatment, so as you can imagine it was a bit of a shock! I carried on with the chemo, Oxalyplatin and 5FU and was scanned again in March and much to my amazement and delight was told that all the mets on my liver had gone as had all but 2 on my lungs and they had shrunk. I've just completed my 12th and last chemo of this regime and am now in that 'place' awaiting the scan and results. I'm keeping busy, my way of dealing with this disease, everyone tells me to slow down, but it hasn't done any harm (so far - fingers crossed). Suze I'm going to read the anti-cancer book and sort out my food, that is my next goal whatever the scan results bring. I am one for thinking positive and if I think food is doing me good then thats another positive step. I also take Life-mel honey morning and night, it's not cheap, but I don't drink or smoke, so thats my 'tipple'.
Good luck everyone, Alison x
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suze
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« Reply #28 on: June 10, 2011, 06:27:39 PM »

How horrible to be told no mets one minute and lots of them the next .. I hope your chemo has done a great job and you will be ok for ages now

As for diet, I always think it certainly cannot  do you any harm to look at what you eat, and it could do you lots of good .... and it is one of those things about focus and being "busy" on your own health as a project that I think really helps ...
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Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
Hazel
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« Reply #29 on: June 11, 2011, 01:16:32 AM »

Your experience sounds  a little similar to mine Alison, i had three years of being told that they thought my lung lesions were chest infection scars then last summer they started to grow! not chest infections but tumours. I have my consultant appointment on 7th July so only the day after you. It's a really edgy time and i hope you have a good result!!!
Oh and a friend sent me this link to a website that deals with alternative routes to getting well

 www.yestolife.org.uk

Hazel
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Call the nurses on 08450 719 301
You never know how strong you are until being strong is the only choice you have!
Blogging at http://elkamouri.blogspot.co.uk/
Below is a bit about me and bowel cancer
http://www.beatingbowelcancer.org/forum/index.php/topic,1677.0.html
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