Hospital Appointment.....

I’m on immunotherapy a drug called Atezolizumab.Im on my 2nd infusion.

I have had a few blips with it.Went into hospitality the first time with a infection,but ok had the 

2nd infusion Monday.I do suffer with leg pain and it keeps swelling but doctors said that should ease.

I don’t see them till the 6th January so I will wait and see fingers crossed.

Other than that I’m not in pain only sore. Once I get off the steroids I’m sure it will be better.

Im not sure if this helps in anyway for you. I can’t tell you if it’s working yet perhaps I’ll find out on

the next visit, I’m hoping to stay on it because I heard some good reviews.

         Take care Merry Christmas x

I’m on immunotherapy a drug called Atezolizumab.Im on my 2nd infusion.

I have had a few blips with it.Went into hospitality the first time with a infection,but ok had the 

2nd infusion Monday.I do suffer with leg pain and it keeps swelling but doctors said that should ease.

I don’t see them till the 6th January so I will wait and see fingers crossed.

Other than that I’m not in pain only sore. Once I get off the steroids I’m sure it will be better.

Im not sure if this helps in anyway for you. I can’t tell you if it’s working yet perhaps I’ll find out on

the next visit, I’m hoping to stay on it because I heard some good reviews.

         Take care Merry Christmas x

Hi

There are lots of people here who’ve had amazing results with immunotherapy and I’m thinking of KTatHome in particular. She may pop in and tell you her story herself, but you can also click on her highlighted name here to read her profile. 

 Then there are others for whom it’s not worked - I was on a trial of immunotherapy this autumn but the cancer has continued to grow. I’m about to start another trial with a drug that uses a different approach. I am hopeful this will be more useful for me. 

I know it’s a cliche but we are all individuals and react differently to these drugs. Scientists are trying to work out why and pinpoint the specific molecular differences that would enable then to predict which type of drug works for which cancers. Doctors would love to be able to run tests on an individual’s cancer and tell them from the start which are the best drugs for them. It’s kind of the holy grail in cancer treatment right now. 

Meantime I can only wish you luck with your treatment. I hope it’s low on side effects, high on effectiveness and that you can find ways to manage the low points that seem to be an inevitable part of this disease. 

Love and hugs xxx

Hi , as says I’ve had good results with immunotherapy, I started Pembrolizumab (which is like Nivolumab) for metastatic melanoma that was in my left ovary and my pelvic and abdominal lymph nodes I was diagnosed as incurable in July 2015 and in April 2017 I was no evidence of disease, and off treatment. I am on Pembrolizumab again at the moment but I may be in a run up to coming off it again. I’m well and not feeling incurable for the most part, I had minimal side effects just a two weeks rash, and tiredness for a few days after every iv. My most recent blip was in November with an enlarged lymph node showed up on a scan and I could feel it and see it, but by the time a needle biopsy was arranged 3 weeks later it had visibly shrunk and the histology report confirmed melanoma that was withering and almost dead which shows it’s working. 

I notice you said you hit a low point, I wondered if that was due to side effects or the mental crappiness of what ifs that we all seem to deal with. The list of potential side effects can look daunting and waiting for the first or second scan can play with you mind. Wishing you luck for today. 

Hi I had 4 infusions of pembrolizumab and then stopped as my disease was progressing so I am not a success.  My main side effects were fatigue, thyroid and weird pain everywhere, including where my tumours were which flared after infusion. I have a rare aggressive kind of ovarian cancer.

however I am really glad tried it and I wanted to say to you, do not lose heart.  It’s such a new treatment and has shown such success particularly in the lung and skin cancer areas, it’s really hard to predict what side effects you may have each infusion and which patients will respond.  It can take a while for your immune system to “wake up” to the cancer threat.

ive been humming and hawing about stopping treatment like you (am now on chemo) - and ultimately only you can make that decision.  The things I ask myself are “I want more time but at what cost” and “ what side effects am I prepared to absorb to carry on”.  None of these are easy questions to answer but take your time. you don’t mention what effects you are having from treatment, sometimes you can have a wee break while they subside also.

wishing you the very best for whatever decision you make - I think you will probably know in your heart what the right decision is for you, it might just take some time or that decision to bubble to the surface.

much love heather xxxx

Sadly I wasnt well enough to go to the hospital today, I've got another appointment on 2 January. I hit a low point because I am really struggling to function on so many levels...i have seemingly gone from being a confident, bubbly, self sufficient woman, living on my own, enjoying life at 65 to this crumbling, unable to cope, scared half to death person I dont recognise. I am a bag of nerves and spend most of my life in a hospital bed in my lounge occasionally getting up to use a commode next to it. I take morphine, anti sickness pills, anti depressants and a beta blocker for my heart. I have a carer three times a day. I'm just blown away at how quickly my life has gone from one extreme to the other. All of this and I haven't even got into the treatment!!

I've read your story and only wish I could be as brave as you...I'm kind of weak and pathetic...

Dear you are NOT weak and pathetic, you are just vulnerable like the rest of us. I’ve been in your position where everything seems completely overwhelming but day by day, baby step by baby step I got myself back on track. As hard as it is you have to let go of the past, learn to live in the present and value different things in your life. I wish I could reach out through the internet and give you a big hug and make you feel you are worthy of care and compassion, which you most definitely are. You have a big adjustment to make and it’s going to take time, let your new friends here, take you by the hand and show you the way to find a sort of peace with the situation.

Thank you hellesbelles I go again on the 6th jan to see oncologist so I will keep my fingers crossed I can still have it.

Hi , I’m so sorry to hear your post and how you feel at the moment. I agree wholeheartedly with Jane though that you are not weak and pathetic you just have an awful lot to deal with at the moment, and no one would really like to make the treatment decisions that we have to make, it’s hard enough sometimes to decide what to have for breakfast ! 

Knowing that you are taking antidepressants, I am making a bit of an assumption that how you see yourself at the moment is because you have been feeling down, and I’m hoping that you won’t always feel like you did when you wrote this post. We all have times when we go over what our lives are like and wish for something better. At those times I remember the 3 positive things post, is it still going in here, there are times when it’s needed more than others. 

I hope the delay until 2/1 gives a bit more time for you to come to terms with what treatment choice is best for you at this time.

Hi

I totally agree with Jane but also I can see how such a dramatic change in your life would hit really hard. This really should be your time and I can’t for one minute think this is what you imagined retirement would hold. 

Just to reiterate. You’re neither weak nor pathetic. You’re having a really hard time dealing with pain and sickness. Sometimes when I’m beating myself up mentally I stop and ask what I’d like my best friend to say to me. Then I say it. Can you be your own best friend right now? This might sound stupid but it helps me. 

lots of love and a big hug 

xxx