topic Re: Nivolumab and Ipilimumab Dual Therapy....continued in Treatments and side effects

Nivolumab and Ipilimumab Dual Therapy....continued

NotaBergen — Wed, 04 Mar 2020 14:57:55 GMT

This is a follow up to the post I submitted between July and October last year. Hope that one proved useful to those contemplating immunotherapy.

Following the four rounds of Nivolumab and Ipilimuab I had six weeks off. The side effects were quite minor and wore off pretty quickly. (Skin rash, muscle aches, head aches, fatigue and general cold/flu symptoms).

First round of Nivolumab only was administered on 11 of November. I was a bit surprised at how the side effects returned so quickly. Although as mentioned in my previous post they wore off after a few days.

Second round was on the 9 of December, once again the side effects returned and were quite intense. This time my breathing became a bit laboured and I had aches either side of my ribs.

This time the issue did not improve, on the 25th of December the discomfort in my ribs became a crushing pain. I couldn’t breath so presented to the hospital emergency department.

CT scans and a chest X-ray showed swelling but little else.

Two days later I had a consult with my oncologist, the issue was diagnosed as pneumonitis (inflammation in the lungs). I was prescribed steroids which had an immediate effect, all the minor irritations, but especially the lung issue settled down.

A week later I had another consult, it was decided to suspend the treatment and ween off the steroids.

The oncologist felt my body had taken all the immunotherapy it could handle for now.

More importantly it had done its job, the CT scan taken in emergency revealed a complete reduction of the cancer being treated in my right lung.

I am writing this having had a follow up CT and consult this week, March 2020.

After being diagnosed three years ago, a total left nephrectomy, two rounds of radiotherapy on lymph nodes in my chest and only six months of immunotherapy for metastasis in the right lung I now have “no apparent disease”.

I am fully aware that this new form of therapy is not for everyone. I will continue to take medication for reduced thyroid function. I have a rash under my arm pits and still have muscle aches. All can be treated easily and hopefully are temporary.

Next scan is in two months, I will remain on close active surveillance. Apparently there are still various treatment options available to me if, or more likely when the cancer fancies another round.

Once again, hope this is useful. Good luck.

Re: Nivolumab and Ipilimumab Dual Therapy....continued

Budgie — Wed, 04 Mar 2020 23:46:26 GMT

That's wonderful news NotaBergen, 😊

Re: Nivolumab and Ipilimumab Dual Therapy....continued

Katekat — Thu, 05 Mar 2020 00:46:45 GMT

That is amazing news @NotaBergen, I am so very happy for you!

Re: Nivolumab and Ipilimumab Dual Therapy....continued

Brogsie — Sat, 19 Sep 2020 11:55:16 GMT

Hi Notabergen

I have just joined the forum and read your post with interest. I hope you are still doing well.

I have been on a2 year trial of Nivolumab since July 2018. Because of COVID-19 and because I was having such a good result my trial was suspended so I was not attending the hospital and putting myself at risk. I was advised to stay home, no one in, no one out as far as practicable. I usually have a ct scan every 12 weeks but it was decided to skip one and stay home. When I had my next scheduled ct scan I discovered that my tumour (nsc lung cancer) stage 4 had grown back to almost the size it was in July 2018. So back to where I was 18 months ago. I resumed treatment immediately and am due to have my next scan in three weeks. I am having lots of new side effects and the old ones (joint inflammation) is increasing with each treatment. Have you suspended your treatment at any time? If so what was the result?
I believe I cannot have anymore Chemo and if the Nivolumab ceases to work I would be interested to know if there are any other treatments available to me.

I look forward to learning anything you have to share.

thank you

Brogsie

Re: Nivolumab and Ipilimumab Dual Therapy....continued

CiennaR — Sat, 03 Oct 2020 04:58:08 GMT

Hi Brogsie,

I have not been on this site for over a year and saw your post and wanted to reply. I was on Yervoy and Opdivo for a 8 months. After 3 months my tumors were gone and the plan was to stay on Yervoy and Opdivia for at least another year. 5 months later, I started to lose my vision in left eye so treatment was stopped. I still can't see but have an eye specialist who is trying to restore my eyesight. I have had 4 scans and each showed no evidence of tumors so went 18 months without treatment with good results. Several months ago my cancer came back unfortunately. I have had and have now again lung cancer. My doctor is deciding on what treatment to put me on this time.

Wishing you well,

CiennaR

Re: Nivolumab and Ipilimumab Dual Therapy....continued

Brogsie — Sat, 03 Oct 2020 10:18:35 GMT

Hi CiennaR,
Thank you for sharing your story with me. I had my CT scan yesterday and will get my results next Thursday.🙏🏻🤞🏻. Over a year ago my Oncologist congratulated me and said by the size of my tumour I was no longer terminally ill but instead I was chronically ill. Now my tumour has grown I guess I am once again terminally ill. How do you cope with the roller coaster of living with hope and then having it dashed away?

Re: Nivolumab and Ipilimumab Dual Therapy....continued

CiennaR — Sat, 03 Oct 2020 23:48:28 GMT

Hi Brogsie,

Yes, having cancer is like being on a roller coaster (and I am not a big fan of roller coasters)! I don't have any definite answer as how to cope with all the highs and lows that make up a cancer patients life. I trust my doctor to do the right treatment but my cancer center offers very little in emotional/mental support. So, at times I feel like I am alone which of course is not true. Cancer sure changes one's life and I just try to get through one day at a time, that's all we can do. I seek little pieces of peace because I need to do that to get through the bad days.

I am sure I am terminally ill too and even when I was tumor free, I was still chronically ill will side effects so....

I wish you good scan results on Thursday, I will be praying. I also go for a consultation on Thursday to see what treatment options my doctor has come up with.

Re: Nivolumab and Ipilimumab Dual Therapy....continued

Brogsie — Tue, 06 Oct 2020 08:51:38 GMT

Thank you
I hope you have a good and positive outcome on Thursday, I will be thinking of you....xxxx

Re: Nivolumab and Ipilimumab Dual Therapy....continued

NotaBergen — Wed, 07 Oct 2020 21:07:24 GMT

Hello Brogsie,
Sorry for the delay in getting back to you, I guess it’s scan day today and hopefully you will get the results soon.
To answer your question, my treatment was suspended last December (2019) after only six infusions. Following several scans this year there is still no active disease. When the day comes that something does show up my oncologist has advised that there are other biological treatments available. I did not ask for details but do see other drug names used on another forum. I hope your oncologist can give you similar reassurance if necessary.
You may have heard of pseudoprogression where the tumor can appear to increase in size due to an immune response. Not something I have experienced but my doctors were certainly looking out for it after CT scans.
I can relate to the joint pain you describe, after ten month I still experience aches in my lower legs and rashes that I did not have before immunotherapy. This year’s focus has been heart related, after a bought of myocarditis (inflammation of the heart muscle). Its was discovered that I was in heart failure due to damage from the cancer treatment, radiotherapy or immunotherapy.
I can only imagine how frustrated you are after doing so well. Once on this rollercoaster the odd straight slow section is much appreciated.
I wish I had more practical knowledge to share, all I can do is in some way relate to your situation and look forward to hearing how you get on.
Good luck!

Re: Nivolumab and Ipilimumab Dual Therapy....continued

MyheroCoolSpy — Thu, 08 Oct 2020 00:09:50 GMT

Stay positive and awesome! Keep yourself healthy strong and boost your immune system always.

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Brogsie — Thu, 08 Oct 2020 04:24:57 GMT

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

Re: Nivolumab and Ipilimumab Dual Therapy....continued

Brogsie — Thu, 08 Oct 2020 04:37:27 GMT

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

Re: Nivolumab and Ipilimumab Dual Therapy....continued

NotaBergen — Thu, 08 Oct 2020 20:34:43 GMT

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.

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CiennaR — Fri, 09 Oct 2020 03:42:07 GMT

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

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Brogsie — Sat, 10 Oct 2020 17:08:37 GMT

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

Re: Nivolumab and Ipilimumab Dual Therapy....continued

CiennaR — Tue, 13 Oct 2020 19:43:13 GMT

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

Re: Nivolumab and Ipilimumab Dual Therapy....continued

Brogsie — Thu, 15 Oct 2020 10:52:24 GMT

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

Re: Nivolumab and Ipilimumab Dual Therapy....continued

CiennaR — Thu, 22 Oct 2020 01:46:24 GMT

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