Immunotherapy with Keytruda and bleeding in stage 4

Hi all you lovely people!

I am new here and I am supporting my wife who currently has stage 4 cervical cancer. She was diagnosed in Sept 2019 with stage 3c1 which progressed to stage 4 during her holistic / alternative treatment approach. The cancer spread into her pelvic, abdominal and mediastinal lymph nodes. She has battled with severe bleeding which was controlled with x4 sessions of radiation. She then started treatment with Carboplatin, Paclitaxel and Avastin which cleared her lymphatic system and shrunk her tumour. However it unfortunately returned quickly spreading through her lymphatic system again.

She is now receiving immunotherapy treatment with Keytruda. She had a PDL1 test score of 5. She has finished her second session of Keytruda and the bleeding has returned. She started spotting around the first dose and then had a big bleed after the second dose. We have heard of two cases, one cervical cancer stage 4 and one head and neck cancer, whereby their tumours bled aggresively after a second dose of Keytruda and then slowed down after the third and started shrinking and disappeared after the following few doses. Keytruda is known to cause inflammation of the tumour, prior to the apoptosis and shrinking of it. 

Is anyone here also receiving Keytruda or another immunotherapy and had similar experiences? We are stuck between a rock and a hrad place trying to decide if the bleedng is caused by the Keytruda actually working or if it is a sign of the cancer progressing once again. If it is the later, we need to look at radiation urgently before the bleeding becomes severe again. She was also receiving high dose intravenous vitamin C (50g) to complement the immunotherapy. We have stopped the vitamin C temporarily though as it also exacerbates the bleeding.

Thank you for taking the time to read my post and I look foward to receiving some feedback from you.

Take care all and keep fighting!

Andrew x

 

Hi Andrew. I am sorry you and your wife have found yourselves in this sad position. I would like to point out that here on Jo's there is a private stage 4 only section and many lovely ladies there  will be able to give proper answers to your questions regarding Keytruda. 

 

Wishing you and your wife the best of luck!

1 Like

Hi Izzy, thank you for the info! I have managed to find the private group and will go about registering on there. 

Best wishes, Andrew.

You'll be in the best of hands with the lovely ladies there

1 Like

Hi Andrew, I completely agree with Izzzy. You will definitely find more answers to your questions from the wonderful ladies in the advanced section. Best wishes to you and your wife as she continues her treatment. 
Maria

1 Like

Just incase anyone in the same situation comes across this post, the bleeding was due to the cancer progressing and my wife underwent radiation to control the bleeding. We also stopped the Keytruda and remained on Chemo however unfortunately my wife passed away 4 months ago.

In our research, we came across a strong link between the gut microbiome and success with immunotherapies. Please see the link below:

https://m.youtube.com/watch?v=T5DIJmlh1MQ&fbclid=IwAR3X0M2bMfV-tdt9FbmXMcLBv-2fa6cohhzchdgeoeWZrONdHFyotZCUEnQ

Another link, watch from 1.08 minutes in:

https://m.youtube.com/watch?v=I57YIMY0z5M&fbclid=IwAR1618OkYpkpm74FtIM1iEbVXx64Cs8NtDvvOIK7lZUiKchruKweqpMmi6c

I never got accepted onto the stage 4 group so I am happy to respond to any questions on this link. Best of luck everyone :heart:

4 Likes

Hello Andrew
I just wanted to say I’m so sorry for your loss and thank you for posting these useful links. I’m sorry you were not accepted into the private section. Jo’s helpline were very supportive when I was feeling emotional and are there for family and friends too. I can recommend them if you have not called them already. There is also now the possibility of e-mail support. I have been trying to take better care of my gut microbiome for various health reasons and feel that the information you have posted will be very useful for many of us on this forum. Thank you again
A

Hello! Thank you very much for the kind words and support. Thanks for the recommendation of Jo’s helpline. I will definitely give them a call as it is quite difficult to find emotional support here in the UAE where I live. I will be moving back to the UK soon with my daughter so hopefully they can also recommend some counseling options there. Thank you and keep well :blush:

2 Likes

Hello again and thank you for your reply. MacMillan is also an excellent charity which provides support for anyone affected by cancer in the uk and their family and friends. They will also offer supporr for children. You could also join their forum from the UAE. Jo’s also have an e-mail support service you could access from abroad.
Thanks again for your reply
A

Andrew I am so so sorry for your loss. It is just heartbreaking to read. Thank you for taking the time to give an update.

1 Like

Excellent thank you so much for that information. I will make contact with them. I am so glad they also offer support for children. I need to focus mainly on my daughter’s mental health so thank you for that!

1 Like

Thank you Izzy :relieved:

2 Likes

Hi Andrew,

I’m so sorry for the passing of your wife. Deep condolences for you and for all the family. She is in a better place now. Thank you for letting us know and thank you for posting those useful links for us all. Wishing you healing and peace x