Our journey with Liver cancer

chyna_plate

 

Hello we are new to this site and I sat up all night reading all the forums and firstly, I got so much positive inspiration from your posts I wanted to tell you about our journey and thankyou for sharing yours.We sold our family home in VIc. October 2011. Early Feb 2012 we were in Mandurah WA and my husband had pain in his left side - went to a GP and found he had shingles but after bloods taken they discovered primary liver cancer (large mass 7cm )Hepatocellular carcinoma. He was given 3 months to live and suggested we turn around and come back to Vic and talk to our family and get things in order. My husbands tumor was related to excessive alcohol and Hep C from home done Tattoos- he also had developed cirissis so his liver was in a bad way. Freemantle specialists decided to try TACE treatment on the tumor in early April 2012. Great news the Scan showed that the tumor had shrunk to 5cm and around July 2012 we decided to continue travelling right around. Blood tests done monthly and phone calls back to Freemantle things looked good and he had no signs of being unwell or the cancer spreading or being active.

67,000ks around our beautiful country we arrived back in Melbourne December 2012 still feeling well getting a bit tired now, we were referred to the AUstin and the amazing liver team there. My husbands was told that he was suitable for a liver transplant and this was the best news ever. The TACE treatment seemed to have worked. After most Jan this year doing numerous tests to see if there were no other problems in having a tranplant we were so positive and happy things looked good. Like a second chance at living. Oh my husband had just turned 60. Mid of Feb final scan was done and if all good we were on the list ......and Bingo! cancer was active again. - so No transplant - they tried to do another TACE but unable to do so.

He seemed to deteroiate so quickly then - maybe disappointment at not getting this second chance - he just dropped his bundle Mid Feb this year , like all of a sudden he couldnt get out of bed, he was incontinent and so totally confused, family all came to stay and spend time with him, arrangements were being put in place for Palative care. They started him on Nexavar, we had all the documentation relate to this drug and it worried me - hand and feet blistering and skin rashes, diarrohea -BUT luckily to date we have had none - not one side effect?? . Our biggest problem is the confusion but with the daily use of Actilax and ensuring bowels opened at least 4 times daily this is all under control. ( we were told about the toxins that go to the brain when the bowel has not been opened so now it is one of the most important parts of his treatment).It is now August and we have been on the drug for little over 5 months, the improvement is remarkable.

 

We had a scan done and somehow the Austin had not recieved the report on the day of our appointment so we are not sure what the tumor is doing and quite frankly we dont want to know right now - Stupid maybe, but we are thinking positive and what you dont know,??? what is the saying. Every day he gets up and spends 4-5 hours out side feeding his ducks and pigeons or pottering around inside - come lunchtime he is exhausted and goes to bed to watch TV and get waited on hand and foot - LOL he even got himself a bell !!!! Cheeky hey.

Now, this is what i want to share with you. The improvement in my husband could be put down to the Chemo drug Nexavar - but my grown up children accessed from the Net DVD's on the use of Medical Cannabis and the effects it has on cancer/pain etc. I was sceptical and have never had any involvement with drugs so i did not want to know about it - i said this will not work - i watched the DVD's over and over and could not believe what i was seeing. So i told our specialists and our local GP that we wanted to try this and they did not sanction its use but knew about studies being done and said - anything is worth a try - if you are able - go for it. So along with the Nexavar we started the Cannabis Oil the same time. At first, it did effect him like he was "stonned" but now 5 months on - having a small amount twice a day directly onto his tongue - there is no visible effect he is having it - BUT again i have to say the improvement is remarkable. He has not one side effect to the Chemo drug, after about a week of begining both he was able to get up and toilet himself -wash and dress himself my children all returned to the different parts of the country they live in - we have not had to access Palative treatment and this week -

We are hitching up our caravan again and travelling . We will drive for so many hours of a morning when he is feeling able and well and prop for the afternoon and evening and then keep on going the next day. He has survived 17months. That initial diagnosis, being told he only had 3 months to live - we have proved that wrong - every day is a blessing .

Please if you are in a similar situation to us - look up the studies and benefits of Medical Cannabis - and God willing you might find another avenue to try in your fight against this dreaded disease. I have to stress again - this has worked for us - i see others have different diet and such that seems to have been succesful in their fight - I did see someone mentioned how they are cancer free and alot have asked her to divulge how! i did not see a blog in answer to them - ?

Cheers and I will blog again when we get on the road and if anyone is interested let you know how our journey is going.

Patti

flkhong

Thanks for Sharing

Hi Patti,

Thank you so much for sharing, it is very encouraging to hear about all the good news about how your husband go through. Yes, please kindly share more about his journey of recovery. By reading what you had written, both of you are so positive and I highly reckon that both of you can definitely get through. 

My husband has went through a major surgery to remove half of his liver. He is back to work. His next checkup will be in Oct'13. I desperately hope that everything will go well. All the best.

chyna_plate

flkhong said:

Thanks for Sharing

Hi Patti,

Thank you so much for sharing, it is very encouraging to hear about all the good news about how your husband go through. Yes, please kindly share more about his journey of recovery. By reading what you had written, both of you are so positive and I highly reckon that both of you can definitely get through. 

My husband has went through a major surgery to remove half of his liver. He is back to work. His next checkup will be in Oct'13. I desperately hope that everything will go well. All the best.

Our journey

THankyou Fikhong for replying to my post - I find it inspiring that your husband has returned to work and i hope that your results in October will be very good news.

Funny thing over the past week, whilst packing for our trip i are noticing my husband is getting very tired and would spend alot more time in bed than he has been, but in reading other people who have been on Nexavar they seem to have this side effect also. I'm determined to get back on the road and make this time special for him.

I see that this is an american forum, something i did not realise when i found it - i have not had much luck finding anything like this here in Australia -I figure we are all people suffering with this dreaded illness and it does not matter what continent you are living on.

Hoping your husband continues to improve'

Cheers Patti

flkhong

chyna_plate said:

Our journey

THankyou Fikhong for replying to my post - I find it inspiring that your husband has returned to work and i hope that your results in October will be very good news.

Funny thing over the past week, whilst packing for our trip i are noticing my husband is getting very tired and would spend alot more time in bed than he has been, but in reading other people who have been on Nexavar they seem to have this side effect also. I'm determined to get back on the road and make this time special for him.

I see that this is an american forum, something i did not realise when i found it - i have not had much luck finding anything like this here in Australia -I figure we are all people suffering with this dreaded illness and it does not matter what continent you are living on.

Hoping your husband continues to improve'

Cheers Patti

Our Journey

Dear Patti,

Appreciate the encouragement. Whenever I think of you, I know that I am not fighting alone. Please take care.

 

Cheers,

Lian

Roseq

Hi Patti, I am from Australia

Hi Patti, I am from Australia too, and am wondering where you got the Cannabis Oil? I read somewhere recently that they are doing live trial in San Francisco with CBD and THC from cannabis after good results on mice.

Your trip sounds fantastic, and I hope you have many more k's in front of you, I am very interested in your journey, is there anywhere you haven't been that is on the agenda?

Sending positive thoughts your way

Rose