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Hello

Posted by Relish1970 on Jun 4, 2018 7:03 pm

Hi My name is rel. I have just been diagnosed with plural mesothelioma and possible peritoneal mesothelioma. I am in my late 40's and the doctors are wondering how I got exposed to asbestos .I  started to find lumps and bumps in Oct 2017 and then in Feb 2018 I started having symptoms. I went for a walk with my mother, and I thought I was having a heart attack I could not breath and I was having chest pain.I went to the emergency room. lots of tests, then the cat scan, showed damage to my right lung possibly caused by asbestos exposure.
   Then I had a special ct scan and MRI. I had fluid on both lungs and the right lung had damage. April 2018, I saw the doctor that told me she didn't think I had mesothelioma, and that she would do a biopsy and drain my lungs. I had surgery and the biopsy showed mesothelioma , Then I met with oncology in May and they talked about surgery and needing to biopsy my abdomen. I was also going to start chemotherapy soon. 
I had my abdominal biopsy today and chemo starts on Friday. Will find out soon if surgery is still on the table. 

Re: Hello

Posted by Brighty on Jun 4, 2018 10:49 pm

Rel‍  welcome to the site!   I'm sorry to hear of your diagnoses.    Wow that is a lot to process!     I'm not famillar with mesothelioma or peritoneal mesothelioma.   Maybe Lacey_adminCCS‍  can find someone on this site that shares your diagnoses or knows more about it.     In any regard, we are here for you on this site, and I'm sure we will be able to hook you up with the right people on the site who will be able to provide you with more information or experience.      Please let us know how things are coming along for you!       

Re: Hello

Posted by Brighty on Jun 4, 2018 10:51 pm

Rel‍  or Lianne_adminCCS‍  can connect you with more information.   Sorry I typed Liane's name but it erased by accident.   

Re: Hello

Posted by Kims1961 on Jun 5, 2018 8:48 am

Rel‍ Welcome to this awesome site.  I have found it so helpful along my own cancer journey.

Sorry to hear of your diagnosis and the journey getting there!  Good luck with the biopsy today and chemo on Friday .  What type of chemo will they be doing?  How long are you on chemo for?

Thankfully they are managing symptoms from chemo so much better.  I kept a log/journal on chemo so i could let my oncologist know how it was going.  They also gave me a number to call before the next treatment if i needed to speak to someone - this was really helpful.  What was interesting is that side effects were very individual - some people breeze through with very little issues and others - like me - had to make some adjustments along the way.  Communication was the key!

Welcome to the group.  Keep us posted!  Kim

Re: Hello

Posted by Relish1970 on Jun 5, 2018 9:56 am

I am getting chemo using Cisplatin and Pemetrexed, each cycle is 21 days. I am not sure yet how many cycles I am doing. I think of questions after I leave the oncologist office. I have chem class today, so I am sure I will get more info. I am on information overload.

Re: Hello

Posted by Lianne_adminCCS on Jun 5, 2018 2:47 pm

Hello Relish1970‍ and welcome.
I did a search and most of our members/caregivers dealing with mesothelioma have not been active of late and may not be on the site often.
I did find a couple of blog and discussion posts that you may find helpful
There is a blog by Captain Dave‍  that may be interesting https://cancerconnection.ca/blogs/518
You may also want to read through some of our discussion threads about Mesothelioma here (click the blue underlined text for a link). 
Our Cancer Information Services line at 1-888-393-3333 is staffed by knowledgeable people that could answer some of your specific questions.

I found when I was in treatment that it helped to write down thoughts and questions in a little book or journal as they came to me and then brought it with me to my appointments in order to remember what I wanted to talk about. It helps also if you can bring someone with you to be the scribe and make sure the questions are asked, answered and written down

I hope all goes well with the biopsy today and appointment on Friday.
Do keep us posted when you are able

Lianne


 

Re: Hello

Posted by Captain Dave on Jun 5, 2018 5:28 pm

Hi, Captain Dave is here, but it is Krow writing here. So sorry to welcome you to this horrid journey, but we are still here so that is good news! Dave has had the big operation, 6 months of chemo and is now in an immunotherapy drug trial at Princess Margaret Hospital in Toronto... but looking to move to a different trial as things progress. We are happy to be support and share anything we have learned along the way. Biggest thing is never give up. 
Keep sailing

Re: Hello

Posted by vedamanickaraj dasan on Jun 5, 2018 6:52 pm

hi iam dasan veda how  r u?  iam fine iam male i had brain  tumour after teatment iam ok but future i dont know.if u dont mind share with me . i dont know fluent english any mistake pardon me .


thank you.

 

Re: Hello

Posted by Relish1970 on Jun 6, 2018 5:58 am

Thanks Captain Dave, Thanks for sharing your journey, I will keep you updated. In a weird way it is nice to have someone who knows what it is like to deal with mesothelioma.( no one wants to have the experience). Reading your blog was eye opening. Thanks for sharing. Hello from Nova Scotia.

Re: Hello

Posted by jorola on Jun 6, 2018 12:06 pm

Hi Relish1970‍ 
I am so sorry to hear of your diagnosis. Did you figure out where you were exposed to asbestos? I ask as it is a worker's compensation claim if it is work related.
Jodie

Re: Hello

Posted by Elsie13 on Jun 6, 2018 3:18 pm

Hello vedamanickaraj dasan‍ . Glad to hear that you are doing OK.  What happens now?   Do you go to the cancer clinic every few months for a blood test? 

Re: Hello

Posted by Captain Dave on Dec 4, 2018 10:35 am

Captain dave sailed on.. After blowing the power grid out, at home bathed in moonlight, his two sons and myself holding him he took his last breath and left. He fought mesothelioma with everything he had in him. He had the HIPEC operation, 18 hours of it. He had chemo for 8 months. He was on an immunotherapy drug trial and it got worse. He was on a drug trial at the National Cancer Institute in Maryland but it just kept growing until he had nothing left to fight with. He had two herbalists, a naturopath, two body workers and an accupuncturist as well as me, his 25/7 caretaker, nutritionist & lifemate. He fought so hard, up until his last day he was convinced he could turn this around. Loved the warrior in him, who fought for what is right, and against all that is wrong. Asbestos for greed, is very wrong.  
There will be a 'Concert for Dave' celebration of his life at Victoria Hall in Cobourg on February 2nd of 2019. 


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Keep sailing

Re: Hello

Posted by Lianne_adminCCS on Dec 4, 2018 11:45 am

To the first mate and life mate of Captain Dave‍ 

I am so terribly sorry for your loss. Thank you for taking the time to let us know. Captain Dave was an incredible support on here for so many.
I found this quote taken from a post as recently as September.

Hi Captain Dave‍ , my parents read your blog here and found it really resonated with them, as well as giving them some hope. So thank you. Sharing your story has made a difference.

This is just one of many people who were helped, supported and inspired by him.

Keeping you and the family in my thoughts.

Take care

Lianne

 

Re: Hello

Posted by Captain Dave on Dec 4, 2018 12:17 pm

Thank you. He fought so very hard, and that gave him three years of precious engagement with life. It is those moments, strung together that make a life. All we can ask for is a good death, and he had that. 
Keep sailing

Re: Hello

Posted by Relish1970 on Feb 10, 2019 1:25 pm

So sorry for your loss loss.
 

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