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Can Immunotherapy cause paralysis on one side of face please. 5

Unique
Posted by

Thank you G bear, Linda and G n' J. For all your support. Apart from my fantastic close friends I have had very little support from the medical profession. I don't think it helped that a nurse informed me over the phone that there would be nothing they could do if it was Bells Palsy. It is quite bazaar that I am coping better with the disease than I am this paralysis!! It is really impacting on me mentally and socially. It has really shocked me the lack of medical support so far and dread the day when my time comes when I need their support.

Thank you again everyone for your support.

Unique.

Unique
Posted by

HI Linda,

I saw the oncologist yesterday for my MRI results on the head. In the meeting he said there was nothing they could do to treat my paralysis. Bells palsy has been known to occur with treatment but if i was to be treated for it it would mean coming off Keytruda for 12 weeks if to treat with steroids, and no guarantee it would work. I was given report after meeting below.  

There is a mild enhancement of the left intracanalicular segment of the facial nerve extending to the greater superficial nerve petrosal nerve. The differentials Bells Palsy vs intraneural spread of tumour. Given the nodularity of enhancement and the history of lung cancer, imaging findings favour spread of tumour.

There is mention of subacute infarct of of the left precunes.

Background of bilateral longstanding multiple intracranial infarcts. A cardiogenic cause should be suspected. Any atrial fibrillation clinically? Echocardiograpy  should be considered. Neurological input suggested.

I have come away from this meeting quite upset, feeling very worried by what this all means. I never seem to get any constructive answers which leaves me feeling very confused about the prognosis. I don't feel anything is explained to me. I don't see what the point is to all this anymore. I have been lucky enough so far to have only suffered severe pain in my shoulder, arm and upper back, which they only offered painkillers for. I don't take painkillers anymore as the pain has eased, however the oncologist only recently offered denosumab injection for it, which i refused because of improvements. I don't know how much more i can take and there is no one to help!!

Unique     

Ellen M-Macmillan
Posted by

Hi Unique,

Thanks for getting back to us and letting us know how you got on yesterday.

It sounds as if you’re at the end of your tether just now. It’s natural to feel confused when you feel that no-one has been able to give you a constructive answer and you don’t feel as if anything has been properly explained to you.

It’s hardly any wonder that you’re feeling upset and left wondering how much more you can take.

However, sometimes a scan report can give the doctors more questions than answers and that may be the reason that your Oncologist has not been able to give you a definite answer to what’s happening. This might also be why they may be reluctant to say how this may affect your prognosis.

Therefore, we would suggest that it would be worthwhile making a further appointment to see your Oncologist again. Don’t worry about doing this as doctors know that some people need to take time to absorb what has been said. They also appreciate that you need time to think about things they you want to ask.

It’s better to go prepared and write things down before you go. This way you won’t forget to ask anything and if possible take someone with you as a spare pair ears. Two sets are better than one in these situations.

Looking at your report there are a few questions that you might find helpful to go back and ask your Oncologist.

A differential diagnosis on a report means that the doctors weigh up the probability of one cause for your symptoms versus another. But it’s not a definite diagnosis.

The radiologist has taken into consideration your medical history and how the scan appearance looks and has reported that they think your symptoms are more likely due to your cancer spreading rather than a Bell’s palsy.

Your scan also reports a subacute infarct of the left precunes. And that you have longstanding bilateral intracranial infarcts.

An infarct means that they have seen tissue death in the brain, which can be caused by not enough blood supply going to the affected area. The terms subacute and longstanding would suggest that these didn’t happen recently. This can be caused by high blood pressure, blockage in the arteries or heart problems.

That’s why the radiologist has suggested that you have further tests done such as an echocardiography, not because they think you have a heart condition but it’s to rule it out.

Atrial Fibrillation(AF) is a heart condition that causes an irregular heartbeat, and can happen in people who have high blood pressure or a heart valve problem. Doctors can check someone’s pulse to feel if they have an irregular heartbeat.

Although this sounds scary it’s common when you have a scan for one thing they find other things that are not connected. They appear to have been there for a while and not caused you any symptoms.

You can ask your Oncologist to explain the report in more detail, but also to ask if you’ve been referred to a cardiologist or for scans to be checked.

The report also suggests neurological input, which would mean that they would want a neurologist (a doctor who specialises in disorders that affects the brain, spinal cord and nerves) to either see you or look at your scan for an opinion.

You can ask if you’re being referred or if your scan being reviewed by that team.

It would be worthwhile re-visiting your pain management with your Oncologist if you felt it was starting to affect you.

If after you see your Oncologist you don’t feel that your questions are being answered then some people may find it helpful to ask for a second opinion.

It can be helpful to make an appointment with your GP, because even although these tests have where ordered by your Oncologist, they will be able discuss them with you in more detail. They could check your BP and pulse for you too. It’s can also be helpful to discuss how all of this is affecting how you’re feeling just now and to talk about what support is available to help you.

Sometimes, it can help to talk to someone on the phone about how you’re feeling. If you think that would be helpful to do our Support Line is open Monday to Friday 9am till 8pm. Our contact number is 0808-808-0000.

Best wishes and take care. 

Ellen-Macmillan Online Digital Nurse Specialist.

Unique
Posted by

Hi Ellene, 

Thank you so much for taking the time to explain everything to me that I can understand. I had to Google most of the words used in the report. A nurse had previously mentioned to me on the phone last week that the report recommend neuroialc input he flatly refused it!. I have a T3 wedge fracture also, that I was aware of prior to this scan and wondered if this could be pressing on a nerve, as I have had long standing pain in my left arm an shoulder, which also effects the nerve in my arm.This pain has subsided a lot in the past few months and do not require pain relief. My initial thoughts were is there a possibility that could cause facial palsy at all?  I guess this is a question for the oncologist team. 

Thank you for all your support and answers to my questions and helping me understand more. I guess my problem is I don't want to except that cancer has spread. I thought being on immunotherapy would mean no further spread when the drug is being effective. 

P.s the g.p will not get involved, they say specialist  area and should speak to consultant. 

Kind regards 

Unique