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Author Topic: Lung Secondaries  (Read 36858 times)
Hazel
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« on: April 05, 2011, 08:33:17 PM »

I notice that there is further information for treatment of secondaries in the liver but none for that in the lungs, is it likely that you will have further treatment information in the future, or is it that there just isn't as much available at present than that for the liver?
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Below is a bit about me and bowel cancer
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lilianwiles
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« Reply #1 on: April 06, 2011, 08:29:40 AM »

Good morning Hazel,
Lung secondaries are far less common than liver secondaries for bowel cancer, as you probably know, and the clinicans we have spoken to about this acknowledge that there is far less information available to people as a result. We would like to address this issue over the next couple of months and are aiming to produce a new patient information booklet about lung metastases, how they are treated and so on.
I read in one of your other posts that you have lung metastases and I wondered if you would like to help us with this?  Why don't you give me a ring on 0208 973 0010 and we can talk about this in more detail......

With best wishes,

Lilian
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Lilian Wiles
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Hazel
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« Reply #2 on: April 07, 2011, 08:49:57 PM »

Willing to do anything top help, i'll try and call tomorrow.
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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
Vivienne
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« Reply #3 on: April 15, 2011, 02:45:32 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. 
I am on the last day of my first cycle of Oxaliplatin/Capecitabine.
The plan is to have 4 cycles & then consider surgery.
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Hazel
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« Reply #4 on: April 18, 2011, 11:37:32 AM »

I know what you mean about 'getting' away with it, after three years you think you're on the home run so it's a bit of a jolt when you're told it's come back! I had oxaliplatin and cabecitabine the first time round, i still have numb feet from the side effects but small price to pay really. I am now on irinotecan and cabecitabine, my hands and feet are very dry and pink as a result of the tabs. Good luck with it, i would like to think that surgery might be an option but my oncologist doesn't seem to think this is something i can purseue maybe because both lungs are affected.
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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
Vivienne
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« Reply #5 on: April 19, 2011, 08:40:32 AM »

Hello Hazel, nice to meet you.

I have just two tumours, one on each lung which they tell me are tiny & would not have been spotted a short time ago.
It came as a big shock as last August the oncologist said she didn't want to see me again & in December the colorectal nurses said they didn't want to see me till next December.
Then in January I had a CT scan which showed these two shadows.
It was another 2 mths before I could have a PET scan, which fortunately showed only these two tumours.
I had quite a strong PN reaction to the oxaliplatin & my left arm was quite useless.  I  live alone, am extremely right handed & the next cycle starting Thursday would have  been into my right hand so today I'm having a PICC line inserted.

Have your nurses not offered you 'udder cream'  for your hands & feet? 
I was telling the nurse that I brought back some pure lanolin from New Zealand last year which I would use if I had a problem this time around & she said they now had this product to offer.

I am also a believer in alternative Healing & have many friends sending me Healing as well as getting some hands on when I  feel the need. I will send some Healing to you.
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Hazel
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« Reply #6 on: April 19, 2011, 10:26:01 PM »

Well Vivienne same as me one spot on each lung, though over the summer they noticed 4 more tiny areas too.My PET scan didn't show up the tumours as they were so small, though they found a hot spot in the pelvis, not sure what that is at the moment as again it was so small, so i am having another one at the end of the chemo. I also had a picc line i hope it went ok going in? my arm was also useless after the first infusion and to have it touched was intolerable as it was so sensitive, it's fine now. My memory of the picc going in is that it is a bit of a bloody affair, i had mine in for 6 months and was never a problem really, apart from having one arm hanging out of the bath! There is no sign it was there now. I do remember having a bit of an ache after it went in and told the nurses next time i saw them and they were concerned that i might be at risk of clotting so i took warferin for the rest of the time.
No not had udder cream but i have some body shop hemp hand cream that is quite good when i remember to apply it! but need to as both my hands and feet are starting to crack a little.
I don't have an active interest in holistic remedies and healing or praying, but i have many people i know doing just that and i am happy to have all the help that i can!
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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
Vivienne
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« Reply #7 on: April 20, 2011, 04:03:43 PM »

To me they seemed to have a bit of a problem getting the line in yesterday, took nearly an hour & a half but the nurse said it was about average. And yes it was a bit bloody but I've never been phased by blood, would have been different if it was vomit! lol
Pre-assessment this morning & everything is ok, bloods are fine so full steam ahead tomorrow.

I hope your 'hemp cream' works on the extremities, if not why don't you tell your nurses to find out about 'udder cream'.  My girls reckon it works.
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The Pessimist may be proved right in the end but the Optimist has the better journey.
lilianwiles
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« Reply #8 on: April 20, 2011, 08:47:56 PM »

Udder cream can be ordered via the internet from sites including Amazon and there are many different versions - some marketed for humans and others for cows, horses and other farmyard animals. It is amazing stuff and over the years, I have seen it be of huge benefit to very many people suffering the side effects of some drugs and chemotherapy regimes.

I came across this company too while I was doing a bit of research on behalf of everyone who may not know where to start.  These people are a small family business. They produce their udder cream in house and it is guaranteed to be lanolin free and hypoallergenic, while their prices remain competitive from what I have seen elsewhere. (They also have no idea that I have posted this information about them here, and there is no conflict of interest).


The Udder Cream Company Ltd.
Laycocks Pharmaceutical
Skipton
North Yorkshire
England

Tel: +44 (0)7889 001886
 

Email: James@UdderCreamCompany.com
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Lilian Wiles
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Hazel
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« Reply #9 on: April 21, 2011, 01:03:37 PM »

Thanks for this info, also i was prescribed pyridoxine last time for the dryness but not this time as the doc didn't seem to think that it worked that well, my hands and feet however weren't so dry last time even though i was hopeless sometimes at taking them regularly.

Glad to hear that the line was sorted in the end  Vivienne, i can't remember mine taking that long but then my memory isn't that hot and the blood doesn't faze me either, but i was struck on how much was lost at the time, compared to other procedures. Good luck, and keep in touch.
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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
Vivienne
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« Reply #10 on: April 24, 2011, 08:44:03 AM »

Hi, I'm starting to feel a little more normal now!

I ended up having an overnight stay in the hospital as I had a bad reaction to the Oxaliplatin.
The flush was about halfway through when I went cold from head to toe & said to the nurse, I feel funny! How funny she asks & I have time to tell her a bit breathless & my heart feels as though it's racing before I suddenly can't breathe. Obviously she knew what was happening as an oxygen mask was on me so fast but it seemed ages before I could get my breath properly.
That was so scary, I don't want that to happen again. The Docs were there quite quickly I think & they kept telling me to calm down but I didn't think I was panicking just trying to get my breath which sounded like someone with whooping cough!!!
A friend who suffers with asthma said it feels like drowning but to me it was like someone had their hands round my throat, pressing on my windpipe, strangling me. It still feels as though there is a finger on my windpipe but it's more like tonsilitis with the heavy feeling on my chest.

I guess they'll reduce the dose next time, I just hope it doesn't mean extra treatments as I have to be fit to steward at The Healing Weekend at Secret World, Somerset on July 8th/9th & 10th.

Thanks for that info Lillian, I don't know where Musgrove get theirs from but it could be of interest for them.

Hope things are going well for you Hazel





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The Pessimist may be proved right in the end but the Optimist has the better journey.
Hazel
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« Reply #11 on: April 25, 2011, 03:19:03 PM »

Oh i am srry to hear that you had such a bad reaction, i was lucky not to be hospitalised although i was told i should have gone in when i was very unwell at home for a week and didn't tell anyone. I would imagine that they could work your chemo around your arrangements if you needed to, they shift mine around sometimes depending on appointments, i have an extra week free of chemo this cycle because of all the bank holidays.
I only had a bad reaction similar to what you have described once after running in from the cold, i couldn't get my breath at all for a min or so becasue i had breathed in the cold after running, i had mine over the winter so used to walk around with a scarf wrapped around my face. The cold reaction is really weird i know, i could never cut meat from the fridge or open the freezer without a reaction.
So far things are ok with me, the wekk after the chemo i feel a bit rough and have felt sick a couple of times, but that's small price to pay. The only trouble i have is remembering to take the capecitabine, i missed three doses this month as i sometimes can't remember if i took them in the morning....and my brain just won't clear enough to count them. i only have two cycles left a the moment but i have been told it is likely i will need another course of chemo again.
Hope you are enjoying the easter at least and that it all settles down for you!
Thinking of you Hx
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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
Vivienne
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« Reply #12 on: April 25, 2011, 09:48:11 PM »

Hi Hazel. sorry you have a problem keeping track of your tablets, I'm sure I would be the same if I didn't have my little booklet.
Roche, the company that make Capecitabine/Xeloda produce a guide to the therapy.
When I had my first treatment I was given this guide which included a DVD about the treatment & a booklet all about the side effects & a diary covering 8 treatment cycles.
There are spaces to note the time of meals, the time treatment is taken & places to note what side effects are experienced.
I was disapointed not to be given one this time so I photocopied the diary & although it's a bit rough it works.
The DVD I gave to my GP when she asked me to go in & talk to some student doctors.
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The Pessimist may be proved right in the end but the Optimist has the better journey.
Hazel
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« Reply #13 on: April 25, 2011, 11:43:23 PM »

That's interesting i have never recieved anything more than the tablets themselves. Last time i had a few leaflets, and this time a file with info about the hospital and suite 8 which is where i have my treatment and consultations at Lewisham. I think i will have a little google around before goin to bed, it isn't as though i have loads of tablets to take! i am useless in general to be honest twice a day should be easy enough to remember!
I spent the day sorting out the garden and my hands and feet are pretty sore now not that it bothers me that much, going to have a long saok in the bath. Something as well that seems to be happening is that i am not going red in the sun, straight to brown! the chemo nurses told me not to go in the sun and wear factor 50, i haven't been in it that much and again don't bother with cream but look like i have been in the med at the moment! I noticed this since the last chemo i wonder if this is another side effect?
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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
alisonhelen
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« Reply #14 on: April 27, 2011, 08:30:05 PM »

Hi Hazel and Vivienne, I too have lung secondaries, when I was first diagnosed with bowel cancer back in June last year the scans showed that I had 2 nodules on my lungs of indeterminant diagnosis and told not to worry about them as they could be anything. When I was next scanned 5 months later they were indeed secondaries and had multiplied , increased in size and I also had some on my liver, not what I wanted to hear. I was 3 cycles through my chemo course of Oxalyplatin and 5FU when I found out and my oncologist decided to continue to 6 cycles and then rescan before deciding on the next course of action. I was scanned again in January and fortunately all the nodules on my liver had disappeared as had all but the original 2 on my lungs and they had shrunk! I'm now due cycle 9 on Friday and will have 12 altogether before being scanned again. It will be decided after scanning if I need more treatment on my lungs, I know I need more treatment on my liver, even though the secondries have gone, so things are a bit up in the air at the mo!
I too have dry hands and feet, but use Neutrogenas Norweigan formula hand cream and it works a treat! I also get an extremely dry mouth when asleep, don't seem to produce much saliver, tried fresh pineapple, doesn't work for me, so any suggestions gratefully recieved! Had 2 Picc lines as one worked its way out, no problems inserting them, done in 30 mins, but I had a bad reaction to the dressing being taken off, my arm still looks and feels burnt 2 weeks later! Good luck girls! Alison
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