Lung Cancer Stage 4

[Spenc]

On 18.01.20 my Dad received his first immunotherapy treatment for stage 4 lung cancer which has metastasised. On 19.01.20 my Dad received a blood transfusion, 2 pints of blood, as his hb level was 87.

Since 18.01.20, going into 8 days now, my Dad hasn’t eaten properly and I am seriously concerned. My Dad for the last 8 days has only been able to eat 2 spoons of cereal for breakfast, no lunch and a quarter of a slice of dry toast for dinner and that’s it. He is in a vicious cycle of weakness from having the treatment, no appetite as nothing to him tastes right and constipation. I understand these are some of the side effects of his treatment but not to this extent.

I’m so concerned as he has had huge weight loss since his diagnosis but since the 18.01.20 his weight decline has not stopped.

I feel that this is a matter of urgency. I am not sure he can survive at this rate for a referral to a dietician to be seen in several weeks time. He is in a much more critical condition to be treated and needs urgent attention and possibly IV fluids to keep him alive.

I really don’t know if this is part of the immunotherapy or what but he spends 99% of the time in bed and he has no energy, walking up the stairs wipes him out now. Before his immunotherapy treatment on the 18.01.20 he was eating okish, small amounts but compared to now he was eating so much better.

I’ve never used this site before so would really appreciate some help or some actual experiences. I seem to be figuring it out as it goes along. The GPs advice hasn’t been great, I spoke to him today and he asked me ‘do you want your Dad to live?’, so I’m abit confused by my GPS advice!!

I look forward to getting a reply and advice, thank you

Spenc

[KT22]

Please urgent seek advice from the cancer unit that gave your Dad the immunotherapy. Similar scenario with my husband last year.. Ask a lot of questions ,ask for second, third, fourth opinions if needed. Too late for my wonderful husband but not for your Dad. Marie Curie will give you good sound advice.

All the best ...keep pushing.

[Spenc in reply to KT22]

I’m trying trust me!!The bloody system works against you. I’ve call GP who was next to useless. I’ve called palliative care who say I need a refer which I have done but have heard nothing. I called oncology department, even though the number they give you doesn’t work, they said take him to A&E but our local hospital has one of the highest cases of covid in the whole country so he doesn’t want to go.

I’m at a loss. I thought immunotherapy was meant to help not make him 100% worse!!

I have no idea who can help as there doesn’t seem to be anyone who knows what to do

[etpd2226 in reply to Spenc]

I’m so sorry you and your dad are going through this. Demand a palliative referral today. They can come to the home and may offer suggestions. I too am stage IV on immunotherapy but do not have the same symptoms. Everyone is different. Palliative helped me a lot. The only other option is seeking a second opinion. In my prayers.

[KT22 in reply to Spenc]

Does your Dad have district nurses visiting? If so call them. I had same problem with the oncology number not working. Have you been given a palliative 111 phone number...demand someone comes to see your Dad at home. Try Marie Curie they are amazingly helpful & should tell you who to call or may visit if in your area.

[Kaylee20]

I'm sorry Spenc that your father and you are going through this. It must be so frustrating for both of you. I don't know what to do about the doctor thing. I am on Keytruda immunotherapy and have only had muscle ache once in a while. I was thinking for food how about a meal supplement like Boost? Maybe try blending all his food such as banana, yogurt, milk or milk, ice cream blueberries. Maybe it is a texture issue and making everything smooth will help him. Best of luck Spenc

[June2081]

Spenc where do you live? I agree with all the comments, seek another opinion, quickly! I do not think your dad should be this ill on immunotherapy, there has to be something more going on, please seek oncology advice. Let us know how he is doing, don’t delay.

[pverde9901]

I'm sorry you and your Dad are going through this. I would also recommend palliative care. They usually have more time to give and have experience with how others have dealt with something similar so maybe it will actually work for your Dad. Don't miss a day to just be there.