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immunotherapy complications

jan9wils's picture
jan9wils
Posts: 73
Joined: Mar 2017

For the past two months I've been sick on and off as a result of side effects from the clinical trial of a new immunotherapy drug. I was removed from the trial in August after the cancer continued to progress. Then I spent some time in the hospital with what was hypothyroidism. Went on levothyroxine. I went on a dream trip to Budapest and Prague the first two weeks of Sept. But, I kept get sicker, mostly with gastrointestinal issues. I had to leave Prague a few days early and flew straight home and went into the hospital. 21 days in hospital while my immune system appeared to be attacking my body. Lots of tests, some surgeries, touch and go moments, much of which I do not remember clearly, which is probably a blessing. Was very miserable and asked to go home on hospice twice but the docs werent convinced that it was not the right time for that yet and here I am!

I did not present as some people have in the past when their immune systems go haywire like this. Apparently there is some pattern to it and I wasn't following patterns. Also, disagreement among specialists caused problems until my original ONC took over and worked with the study dr (who doesn't have hospital privileges) to get me to a more stable place. I'm better, but a long road of recovery ahead. I have good days and bad days. Have great difficulty keeping electrolights in balance so was on daily fluids but now on every other day. Progress! Am able to eat small amounts 4x day which is helping with energy a bit but still very weak and dependent. Tiny walks several times a day, sisters who are taking turns staying with me, support, prayers, love from good friends, my children and their families are what are getting me through. Also, the care and concern from the women on this board! 

I'm still hypothyroid, on blood thinners from clots that happened in iv and pic  lines, etc. steroids to keep immune system in check, pain patch (my new best friend), new port, and some other meds for the digestive side effects that are like colitis though I don't really have colitis (its the immunoresponse). Blood levels are checked 3x week to try to keep electrolights, thyroid, etc in balance. 

Friday I turn 64! I wasn't sure I was going to see this birthday and now I am so happy to say I'm going to be 64! When I was so sick I asked for no visitors. Not sure they would have been allowed anyway. But now I am ready to thank my friends and family for their love and support and prayers as I really believe that is what helped guide my doctors to making some good treatment decisions for me. I'm celebrating by having a litte catered supper Friday night and of course, cake! Just an hour and a half with my closest who live here and my kids. I am beyond happy I can celebrate with them! I want to thank them each in person for being my friend.

As I recover and regain some independence and strength I will reflect on where my cancer journey will take me next. I've tried so many things and it may just be time to say enough, let me stay comfortable and enjoy what time I have left without interfering with the course my disease wants to take. Or, maybe I'll get stronger and feel like trying something to see if it can hold the beast at bay a little while longer. I don't know at this point. These are such difficult decisions we try to make, dealing with an inexact science, as we duel a beast of an illness, that has so many promising treatments looming out there, but no one "silver bullet." How do you make your decisions?

BluebirdOne's picture
BluebirdOne
Posts: 211
Joined: Jul 2018

I am so glad that you have recovered enough to celebrate another birthday. Your time with family and friends is precious. Our decision trees end up looking like bushy decsion shrubs as the choices and options branch out to places we may not want to go. There are few wrong answers at your stage of survivorship, but the decisions are still very difficult. 

I am thinking of you. 

Denise 

 

barnyardgal
Posts: 227
Joined: Oct 2017

Happy birthday! I'm glad you get to celebrate!

You have been thru a lot. I'm glad you are doing better and that you have such good doctors. I haven't been in the same position, but I tend to research, then pray, consult family and close friends, and make the decision. I think so much of this is just plain hard, and everyone deals with it different.

oldbeauty
Posts: 197
Joined: May 2012

Many happy returns.  As you say, there's always hope.  Here's hoping you continue to gain strength and that you find peace with the decisions you make as to further treatments or no.  Your attitude is enviable.  Best wishes, Oldbeauty

MAbound
Posts: 891
Joined: Jun 2016

Jan, your post is like a birthday gift to us all. I am so glad that you are throwing this party and celebrating with your family. It's the best outlook to have in both good and difficult circumstances because none of us know how long we have on this earth. It's a lesson to all of us to keep on making those memories that everyone can cherish. 

I'm the last person to say how one makes decisions. My husband and I keep wanting the other to decide just what's for dinner much less what to do when talking about the what-ifs that life can throw at us out of the blue like this cancer. It's easier in the moment to put those kind of decisions off until you can't anymore, but it's kinder to loved ones to figure it out for them before it smacks them in the face. Voicing what you want will give them comfort if they know your wishes to honor ahead of when things become a crisis, so it's good that you are giving that consideration. It helps to know where you want to draw the line when the answer to prayers is something other than what was asked for.

I'm glad you still have hope. We all walk in each others shoes and and loss strikes us down where we live, so your having hope means a lot. We've been blessed that you found us and no one will be ready to let you go until you say you've had enough. Whatever the future holds for you, whatever side path you decide to go down next, we will be there with you.

 

 

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

thank you for sharing your experience.  21 days in the hospital had to be rough but I like your attitude and positivity.   We shine you a very Happt Birthday celebratMing with friends and family

my best to you 

Kathy

Forherself's picture
Forherself
Posts: 241
Joined: Jan 2019

Your road has certainly been hard.  I wish we could ease that .   But your decision, how do you make it.   For myself I find that I usually know at the time I have to decide.  It comes from who you are, and not from anyone else.  I think you will know your right decision.  Look inside yourself.  Blessings to you and prayers for. your comfort.

 

Kathy G.'s picture
Kathy G.
Posts: 212
Joined: Dec 2012

Happy Birthday! And may the good Lord bless you with many more!

 

I have never been in the position of having to make such serious decisions. All the more reasons I have such respect for all you warriors have gone thru & what you continue to face!

 

Sorry you went thru such a rough time...I am sure it was scary, but you made it and with a wonderful attitude!

 

Definitely due for a celebration. Enjoy!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2616
Joined: Mar 2013

dear jan, thank you for coming and letting us know what was happening - and there has been a lot!  

Happy birthday and I think you have a wonderful idea of a catered party to celebrate.  So many things to celebrate there.  

Donna Faye's picture
Donna Faye
Posts: 274
Joined: Jan 2017

I am writing from my hospital bed but not sick, just here for prep to biopsy this afternoon in OR so I can only imagine what 21 days were like. I am so sorry you are having to deal with all this but so glad you got most of your dream trip. I hope that things will work to bring you the most comfort and peace. Also sounds like a good birthday, quiet but with those closest. At 79, it has been easier to plan how I want to go forward. I was 57 when I had stage3 BC and I was willing to fight cancer but now after 2 more battles, I am weary. You will find your own plan and I am sure you will be content with choices you and your loved ones decide. As so many say on this site, we have all learned one day at a time is our speed. May the good Lord bless and keep you in the hollow of his hand; may the sun rise up to meet you and may the road you travel be kind. Much love from a fellow traveler.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Jan, what a journey. Thanks so much for sharing it with us. So sorry you are having to go through this. Whatever comes next; please know that we are all here to support you. 

Happy Birthday. I hope you enjoy your celebration to the fullest!

Love and Hugs,

Cindi

Jairoldi's picture
Jairoldi
Posts: 217
Joined: May 2017

Wishing you all the best of everything that life has to offer.  Happy Birthday!

 

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

Happy birthday, Jan!! I sure am glad you made it through that nightmare and are able to celebrate your 64th birthday with family and friends. Please keep us updated as you work your way through this journey none of us wants to take.

Love,

Eldri

Feelingalone74
Posts: 236
Joined: Jun 2019

So sorry to hear that you weren't well but very glad you're doing better!

Happy 64th Birthday to you tomorrow!!! It sounds like you are going to  have a very nice celebration !!! Enjoy every moment!!! 

Prayers to u and positive vibes being sent your way.

Fridays Child
Posts: 82
Joined: Jul 2019

Best wishes for a happy day, and I hope your party is exactly how you want it!

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

savoring every minute of your day. 

MoeKay
Posts: 220
Joined: Feb 2004

Hi Jan, hope birthday number 64 is your best one ever!!  And may you have many, many more happy and healthy birthdays!!!!

SF73
Posts: 278
Joined: Oct 2017

Happy birthday, Jan9Wils! I hope you are having the most spectacular cake.

jan9wils's picture
jan9wils
Posts: 73
Joined: Mar 2017

Thank you everyone for the birthday wishes! I had a very nice gathering. It was my best birthday yet and I am so glad I was able to enjoy it with people I love. Now onward to healing and putting on some weight and muscle!

Feelingalone74
Posts: 236
Joined: Jun 2019

Glad to hear Jan9wilsyour birthday celebration was your best yet!!! 

Wishing u good health and many more birthday celebrations just like that!

Warmly,  Michelle 

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