Nivolumab and Ipilimumab Dual Therapy....continued

[Brogsie]

ThanK you for your words of wisdom MyheroCoolSpy, normally I am that person, but today the news was not good. Maybe tomorrow after I have had time to absorb all the oncologist said I may be able to stand up, dust myself off and prepare to fight again. Your words give me inspiration...xxxx

[Brogsie]

Dear NotaBergen,

Thank you for replying to my post.
today I learned Nivolumab was no longer working for me so my trial ceased. Without treatment I have months not years. I am hopefully going to start a new trial if I meet all the criteria in two or three weeks time. Like you I am not a lover of the roller coaster! I hope you are getting positive treatment. I was really sad to hear your treatment had caused you heart related problems. Please continue to post how you are doing.

until soon
brogsie....x

[NotaBergen]

Brogsie,

                Not the best news but sounds like there is a chance of further treatment. 
I guess you are in for a painful few weeks waiting to get further news. I’m sure a lot of people will be willing a positive outcome for you.

Remembering those conversations with my doctor where all you hear  is “it’s not good news I’m afraid”. In a movie or TV show that person in in real trouble, but as most people on here will know the chances are you will have that conversation several times. 

Despite the heart issue I find myself in a pretty good place at the moment. Medication is at the right level so I’m getting back to a reasonable level of fitness. Hopefully I’ll be ready for the next round whenever that might come.

Good luck for some positive news.

[CiennaR]

Brogsie,

I am not sure I  am even posting in the right place.  I wrote you a day or two ago to say don't give up.  I am a good example.  I found out today it was decided the best treatment for me is called Cryoaboation Radiation.

It isn't done too often, and the radiation doctor who did my recent biopsy is going to do it.  Hardly any side effects except I could get a collasped lung but have had one before so will chance it.  I just want you to know something could/will come up to help me and give you hope.  I was told today my treatment isn't a cure but will give me time.  There was a time when I wanted a cure but I can live with time.

I will be hoping for a treatment for you, more time for you and any time you need to talk I will listen.

Wishing you the best, CiennaR

[Brogsie]

Hi CiennaR,

I too am not sure how or where to post on this site, I find it confusing to use.

I am thrilled you have been given the opportunity to try a new treatment. I hope and pray it works for you. I was amused by your attitude referring to the prospect of another collapsed lung. How our acceptance of such terrible things changes as we fight to survive.

I am to start in a fortnight or so a Chemo trial, it is a random selection of one or two Chemo treatments administered every three weeks. My participation will depend on my biopsy results to be sent to Singapore🤞🏻I will be leaving the RBWH and going back to  the Prince Charles. I have the same Dr and have a great deal of faith in him. Thanks to him I have already been given more than three years more time. Like you I will settle for time and try to use it wisely. I don’t put off today what can be done tomorrow, instead I try to make the most of every day, but if my body tells me to sleep, I also do that. I live alone and have not taken up my home care package for home assistance but feel it is now time. I like to be independent and find it hard to ask for help. I am blessed to have three amazing adult children who will help if I call. I think for me it is important my children remain my children and don’t become my carers, I feel the same about my friends, I value their friendship and want them to visit me and not come to clean my apartment.

sorry, I am rambling on a bit...oops!😂

Stay strong and positive, my very best wishes...xxx

Brogsie

[CiennaR]

Hi Brogsie,

I think it is nice we are keeping in contact as I know for me (as I hope for you) it helps to have someone else besides family to talk to and who knows what it is like to go through having cancer.  I am married and like you have 3 grown children.  My husband has taken my cancer really hard but he has dealt with it first hand for almost 4 years.  You are right on when you said, "It is important our children remain our children and not our carers".   My kids are amazing too and we both are very lucky to just know they will be there if we really need them.  I always tell them the truth about what doctors said, tests results, etc.  but I do try to put on a "brave" front for them.   I, too, like to be independent, in that I try to do housework, gardening, etc.  But it is hard because of the vision loss in my one eye.   I can't believe I have not driven in over a year.

I really hope your biopsy results  qualify you to participate in the Chemo trial.  I am glad you like and trust your doctor.  That is so important.  I am gathering you live in Australia? or England?   I live in United States.  I go to a University Hospital/teaching hospital.  It is about 1 hour from my house but it is worth it because I like all my doctors alot there.  My cancer center gives me a  main oncologist and then a team of doctors who get together to discuss treatments, tests, etc.   My eye clinic is also there.  

It sounds like you use your time more wisely then I do.  I do appreciate, reflect on each day but find so much of my time is spent on medical "stuff".  Right now I am waiting to get scheduled for my treatment procedure, which might also mean a(another) Covid test, blood tests and even another PET scan.  But I am  excited(might be wrong word) to have the procedure.  Again, you are so right, we accept terrible things to have another opportunity to fight and live some more.

My best to you and hoping and praying you get accepted into the chemo trial.

CiennaR

[Brogsie]

Hi CiennaR,

hope you are well. When do you start your new treatment?

I realised I am very silly for some reason I thought this site was a local one and did not realise I was speaking to someone in the US. I live in Brisbane, Queensland, Australia. Where are you?
I am waiting to see if I have been accepted for a new trial, my biopsy etc has been sent to the US. The trial required 650 participants from 300 locations world wide, if approved I am the only one from my City. It is a random selection. It is a study to compare AMG 510 versus Docetaxel. From what I have read Docetaxal is a Chemo with all the horrible side effects, baldness, nausea, anemia, lethargy etc. just when my hair has grown back and been styled to a length I love😂 but it is only hair and no good to me if I am dead. I have heard if I paint my toenails and fingernails black, thereby blocking the light they will not fall off! I am 66yo female  and consider black nail polish to be worn by trashy girls but my daughter assured me today it is considered rather  chic! Have you heard of this?

I am very fortunate and do not pay for my cancer care or any of the associated medical costs. I had paid for top level private health insurance for over 40 years but was admitted through AE in a public hospital. I cannot fault the treatment I have had. Like you my Oncologists meets with a team of health care specialists once a fortnight and they discuss each patient. I have also learned if you are on a trial you are even more carefully monitored and every detail recorded. I consider myself to be very blessed to have the opportunity to go from one trial straight into another.

Depending on which drug I am given I expect to be rather ill for a while so since last Thursday I have been trying to get all my ducks in a row. My first priority was to make sure I have gifts for my Grandsons for Christmas, I had bought these already but weakened and have already given them to them!🤷‍♀️  If I could bottle the pleasure I felt when my four year old grandson threw his arms around me and lisped “oh Grandma you spoil us”. It is what my living is all about. Everyone has a different reason I am sure. Mine is the joy on the faces of two little 4&5 year old boys. When I am with them I don’t even think about my cancer. I am however now an expert on every pup in paw patrol!😂😂

I have a govt funded home care package to encourage and support people to stay living in their own homes instead of moving into nursing homes. My package gives me up to 9 hours help at home per week. I am starting tomorrow to have someone come in for two hours twice a week to clean, cook, shop or just sit and talk, whatever I want and I have now organised through this scheme a podiatrist to come to me every six weeks and a remedial masseuse to come once a week. Up until now I have managed on my own but with the pain it has at times been a struggle and I often don’t take my pain relief because I need to drive. I believe our government is very generous and I am very thankful to have a package allocated to me. Do you get help at home? Even with your husband, there must be times when an extra hand is needed.

please keep in touch and let me know how you are going...xxxx

Brogsie

[CiennaR]

Hi Brogsie,

Hope you are doing o.k. and maybe have heard about the trial you want to participate.   I have never participated in a trial but here in the USA they are running advertisements about Nivolumab and Ipilimumab as a new dual therapy which surprises me in that my oncologist said she started giving it to her patients in 2014 so it has been around for a while put my doctor was always telling me "We don't know alot about the side effects".  I hope that if you qualify for the trial, the side effects are not too bad.

Believe it or not, I have not had Chemo.  The SBRT radiation was really problem free but immunology was a different story but it prolonged my life.   I am noticing my doctors at cancer center are saying,  giving me more time, prolonging my life.  No more talk of cancer free which truthfully can depress me at time.

I definitely would paint my toenails and nails black!  Here, the young girls call it "goth". Just no black lipstick. (ha!ha!).  Sometimes, I have my daughter paint my nails and toenails just to feel better.  Pale yellow is my favorite color.

I am 69 and live in northern California about an hour away from our state  capitol, Sacramento where my hospital, cancer center, eye clinic and other clinics are all together.

I do have been trying to get my ducks in a row too.  I get so overwhelmed at times with all that goes with cancer.  Just yesterday, we spend 2 hours traveling to hospital so I could get my Covid test as this is a requirement before surgery and apparently my treatment is considered surgery now.   I have it tomorrow and things have changed somewhat as now I am going to be put completly out and I might have to stay overnight in hospital.  This procedure is  something fairly new they are doing at my hospital now so I am slightly scared.  They didn't schedule me till afternoon and said plan to be there 8 hours!  My son is taking me and my husband, makes me happy husband won't be alone but because of Covid only 1 person can come in hospital with you.  

I can see how happy your 2 little grandsons make you.   Sometimes it is hard for me with all the cancer details, etc. but I just have to try and really remember what is important.

Thanks for listening and glad we are friends.

Linda