New Here … Head/Neck inner ear tumor

Thank you for taking the time when on your holiday. My husband had just had infusion 5, and sue a scan soon. Fingers crossed. Enjoy the rest of your holiday. 

Hello, hope the infusions went well. I'm waiting for scan on Monday.

Gillian

Hi - Thanks for the message, yes I feel really anxious. Not sure whether headache is stress or not?! But hoping it is.

Will know more on 4th July. Hope you are doing well. Gillian

Also, yes website a bit clunky !

Hello SnowWhite,

I'm finally back home and settled in again! What I thought I would do is send you a link to my Cancer story, under my real name, which was used last year on another well known UK Cancer discussion  forum site. This will save me the effort of typing it all out again. I hope the link works for you? If not let me know? If you want to know anything else please feel free to ask! 

cancersupportuk.org/.../

You may wonder why I posted my story on online. The reason being that I very rarely discuss or talk about what happened to me with other people, friends, family etc. on social media. However I find it cathartic to share with other people who have had similar experiences of cancer to me. I truly believe that you really can't understand how devastating it is to you and your loved ones to be diagnosed with cancer and the consequences of that diagnosis unless it has actually happened to you.

Thank you Oldbob62. Yours is an inspiring story that has restored my hope. My husband also has some face drop on the left side. He has oropharyngeal and base of tongue cancer. They have scanned and we await the results of his immunotherapy treatments when we see his oncologist in a weeks time. He is having his RIG fitted today due to issues with swallow. I’m pleased that your swallow and ability to eat have been restored. Did you have exercises for this? My husband still gets a lot of head pain as his cancer is pressing on nerves. At what point did your pain go away? Thank you for sharing. It’s really helpful to give hope to other people that even at this late stage, you can still live with cancer or even be cured

Hello oldbob

Im not very good at opening up to people, I was diagnosed with ear canal cancer which has started to grow into inner ear   Oncology are going to put me on CEMIPLIMAB soon . Been feeling very dizzy last few weeks  Did you have any problems with vertigo, did the treatment help. How long was it before you started to feel any effects from the treatment. Sorry i have lots of questions. Basically i have an overwhelming feeling of doom.

Hello Alexc, 

I was told when I started the treatment that I would probably feel worse after the first 2 infusions (1 every 3 weeks for 2 years). This was indeed the case. After the first infusion I collapsed at home and had to be admitted to hospital where I stayed for 6 weeks. After the second infusion my oncologist wanted to stop treatment but my wife persuaded him to carry on. After the third infusion I started to get better and better. My oncologist actually admitted it was a learning experience for him and that they should continue treatment until at least the third infusion and just hold their nerves as my response to the first two infusions was exactly as expected.

having said that all cases are different and individuals being treated are all different. I was extremely fortunate that I responded to it so well.

I really hope it works for you. Apart from the affects from the initial infusion I didn’t suffer from any side effects of the treatment. It did occasionally make me feel bad tempered and sleepy immediately after the infusions (30 mins via a cannula).

I hope all goes well.

Good Luck,

OldBob62

I forgot to add I did suffer really badly with vertigo and that is what caused me to collapse at home. I still have balance problems now but very mild compared to what it was. I think possibly caused by the damage the cancer did rather than the treatment.

Thanks

Oncologists has told me to expect a phone call next week regarding start of treatment.Would you  mind if i stay in contact with you.