Immunotherapy

Hi chell

I have lung cancer with secondary lymph and bone mets, my treatment plane commenced in jan  2022, I had 4 cycles of chemotherapy combined with immunotherapy I completed this part of treatment plan at the end of April 2022 I am continuing with immunotherapy the next 18 months, I had a few issues with the combined part of my treatment plan but nothing that couldn’t be treated, my medical team have been brilliant, the immunotherapy is easier to deal with, the worst side effect I have is after the immunotherapy I am very tired for 2 or 3 days but this passes and I’m fine again, I am able to do everything I did before my diagnosis and subsequent treatment although I am much slower now, I don’t mind that to much being a bit slower is not a bad thing in my book. 

my CT scan results have been positive and my cancer has shrunk overall. This is a positive for me. I’m happy to chat with anyone who wishes to explore this subject.

have a great day Hugs xxx

Donna

Hi chelle,

I started pembrolizumab immunotherapy in December 2020 after a diagnosis of stage 4 adenocarcinoma spread to adrenal gland and aortic lymph node inmy stomach, after 4 cycles of pembrolizumab every three weeks i haf repeat pet ct and then had targeted radiotherapy to the chest for 20 days at 55gy then oxgord for the adrenal area again targeted sabar 55gy then back on pembrolizumab to date. 

My immunotherapy is due to come to an end this December on the trial i have been on but my cancer is very stable to the point its non measurable in all areas other than my lung so good news i only have a blood clot now,  as for the pembrolizumab it's self i had a few side affects at the start hut they wore off as my body got used to it and it was only stiff joints. 

Hope everyone is well

Best wishes Darren 

Hi Darren, I'm also on Pembrolizumab.

I also had some side effects to start with, to the point they've given me a break from it this cycle.

But I'm really hoping they put me back on it for cycle no. 3  because if it works, im willing to put up with the side effects to reap the benefits.

In fact I think I'll keep my mouth shut next time. I don't want them stopping it altogether!

Darren it sounds like you are doing really well on immunotherapy. Sorry to hear about the blood clot, but hopefully that can be sorted with blood thinners? I hope you continue to do well, I have heard very positive stories from people who have finished their 2 years on treatment, and continue to stay in the unmeasurable stage and NED. X 

Hi Harebellle sometimes we need a break in treatment, it can be very draining x 

Hi Chelle,

I don't write much here, but when I do...

My diagnosis is T4 N2 M1c non-small cell carcinoma of the right lung (adenocarcinoma) February 2018. PD-L1 score 80%, EGFR wild type, ALK negative, KRAS mutated.

After a brain tumour was resected I went straight onto Pembrolizumab 200mg every 3 weeks and have been ever since. I get MRI (head) and CT (thorax+abdomen) scans every 3 months.

After one year a spiculated mass in the middle lobe measured about 15 mm, previously 36 mm (3.5 cc, previously 30 cc). After two years lesions were further reduced and I was stable, with the lesions considered to probably be scar tissue, too small to accurately measure. I remain stable.

Practical tips:

1. Do what the consultant says. Completely, to the letter.
2. Tell the consultant everything. Full disclosure, whether you think it's relevant or not.
3. Use the days between infusions to write down questions so you're ready to ask them when you're at the hospital.
4. Document everything and save it in a loose-leaf folder along with your letters, don't trust your memory.
5. Get your GP to sign you up to my.patientsknowbest.com

Side effects from the immunotherapy have been:

1. Diarrhoea: Experiment with changing your diet. Take one food/drink item out for a couple of days or so and note any changes. Resume, then move on to another item. Keep going until you settle on food your gut copes best with. Increase liquid intake to offset what you're passing out. (While I'm on diet, increase your protein intake, you'll need to be making white blood cells a-plenty, but don't overdo it and keep an eye on your blood tests.)
2. Itchy skin: Exfoliate. Moisturising helps a bit but I use a non-scratch washing up scrubber when I'm in the shower. That made a huge difference for me. Not such a problem in very hot weather when I'm self-moisturising. Mild Leser-Trelat syndrome too, many new pale mole-like lesions on skin, get them checked to be on the safe side. Experiment with the shower gel, I now use baby shampoo.
3. Painful joints: Mobility exercises will prevent losing what flexibility you have. Ibuprofen helps too, it's anti-inflammatory (do not take on an empty stomach.) I take 200mg before bed to help me sleep, 400mg before exercise. (I tried food supplements like glucosamine and turmeric but they didn't make any difference.)
4. Fatigue: exercise. Bit of a Catch-22 this, how to raise energy when you're too wiped out to do anything. Start off slow and easy, don't rush but persist in gradually increasing the workload. Any type of exercise seems to work fine, aerobic or anaerobic. Brisk walking outdoors for half an hour is surprisingly effective. Exercise also helps boost the strength of the immune system response, so win-win.
5. Runny nose and productive cough: Worse first thing then subsides during day. A side-effect of immunotherapy and a consequence of a heightened immune response. Not a lot to worry about and not much to be done. Consider closing the windows and running a HEPA air filter.

kind regards
Steve

Hi Steve, that is very helpful thank you. 
I am so glad that your bumpy journey has taken you to the stable Mable club. Immunotherapy is such a break through in lung cancer treatment. Not suitable for everyone, and not everyone is successful on it, but when it works, it works! X 

It’s good to hear immunotherapy is working for so many people out there.
My husband was diagnosed last year in June with inoperable and incurable NSCLC.
Sadly my husband has not had the same good result, his first triple combination treatment (carboplatin, pemetrexed and pembrolizumab) resulted in immuno induced hepatitis which also lead to a chest infection and three months without treatment. But his next three cycles were okay with few side effects and his CT scans showed a partial response. He then went onto 3 cycles of treatment with pemetrexed and pembrolizumab with little change showing in his scan. Then 3 cycles of pembrolizumab only. He developed pneumonitis, again probably due to the immunotherapy. He had a chest CT scan to rule out pulmonary embolism and sadly this also showed his cancer had grown in the lungs and mediastinal lymph nodes. A further full body CT scan has shown the cancer has now spread to his abdominal and pelvic lymph nodes and no further treatment is of benefit. He is now on steroids and Oromorph to try to help with various symptoms. Obviously we are devastated that he is one of the unlucky people for whom chemotherapy and immunotherapy didn’t help. 
But it’s wonderful for those people who are benefitting from immunotherapy and we wish them well.

Grasan

Grasan dont give up hope i thought i was doomed when told i had stage 4 lung cancer spread to adrenal and lymph nodes in  the abdomen but the pembrolizumab and radiotherapy have done me well. Yes i have sleep apnea, diabetes and pulmonary embolism but i am damed if i am gonna give up i am lucky enough to work full time keeping life normal. 

Best wishes 

Darren

Thanks for your thoughts Darren.

We have accepted that there's no chemotherapy or immunotherapy which can help going forwards but we are still being positive " no one knows how long a piece of string is" and every day is a bonus. 

Grasan