Just an update after today's Oncology appointment - he wants to start my mum on Carboplatin and Pemetrexed chemotherapy. Her first is on Wednesday, he is going to start with just Carboplatin and also an infusion to help strengthen her bones. This will be followed by both drugs on her next session in 3 weeks time. She will have a scan after the second session and then decide whether to continue. My mum is also eligible for Immunotherapy but they want to see the response to chemotherapy first.
Whilst in the office my mum mentioned a little lump on her scalp near the hairline which has been noticeable for a few weeks. The oncologist looked at it and said he thinks it's a skin metastasis. This was a surprise! We have never heard of skin mets, but my understanding now is that these are rare but occur in advanced lung cancer and don't carry a good prognosis which of course is upsetting. She will have radiotherapy to this area and also to her femur this week.
Trying to stay positive now and take each day at a time x
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MissyD1
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hi pleas stay positive my husband also has stage 4 lung also in his plura, my husband did pemetrexed and carboplatn, he did have some shrinkage to the tumour, and the only side effect was tiredness,he is now on immunotherapy so stay strong and i hope all goes well with your mums treatment x
Thanks Sue2428 how has your husband found the immunotherapy? We are pleased that my mum is eligible for this, just feels like every week brings some bad news at the moment but hopefully that will change!
My first chemo was Carbo and Pemetrexed and I did quite well on this combo -- I even reached NED, the first Summer (back in 2015) and did not find the side effects to be too difficult. I had nausea (controlled with Zofran) and fatigue, and it would hit 2-3 days after the Infusion and last a few days, then improve. My hair thinned, but I never lost if wall and I lead a fairly "normal" life that summer. Keep very well hydrated and drink healthy smoothies, if you find it's hard to eat solid foods. You can make them with lots of fresh fruits and veggies and ever add protein powder. I was determined to stay positive and fight hard.
I'm glad she'll also be able to save "Immunotherpay" to use at a later time, if needed. That's how it went for me and in time, I did have progression and then moved on to (Opdivo) which also worked quite well. I am currently off treatment (due to low grade pneumonitis) a common and known side effect, but even after stopping the Opdivo it continued to work. My tumor is now very tiny (on my June CT Scan my Onc feels like likely only residual scar tissue) and I have been stable now for almost 11 months, all while be off treatment. I'm feeling much batter, (still have fatigue and aches/pains) but am enjoying my Summer and spending lots of of wonderful time with my new baby grand-daughter -- I babysit a few hours a couple times and week and LOVE it.
I wish your Mum well and hope she too will do well with her treaments! Take each day as they come !! I'm Stage IV NSCLC diagnosed 3/27/15 and living "life" -- something I truly never imagined when I was diagnosed at Stage IV with a brain tumor, Stage IV Lung Cancer and a Pulmonary Embolism....totally out of the blue....! I feel blesssed...and plan to be here a long time to cherish my new grand baby....she's my new hope, love and inspiration...
Hi Lisa, thank you for such a lovely and positive reply! That's fantastic that you are now stable and that the chemo and immunotherapy worked well for you.
My mums stage 4 diagnosis also came out of the blue, it has been a very difficult few weeks. We do feel blessed that she is eligible for immunotherapy and are just hoping and praying that she has a good response to treatment. Hearing experiences such as yours gives us hope that she can do this!
Wishing you all the best and lots of happy times with your grand baby!
Debbie, my friends here have offered good reasons for you and your mom to stay positive. They know what they are talking about! That isn't to say that you shouldn't express your feelings loud and clear - of course you have felt like it was one bad thing after another - it has been! You deserve that recognition. I just want you to find comfort in the hope that is abundant here, and to have the grace of these stories that give a beautiful human face to this whole difficult experience wash over you. Hang on, we are with you!
Thank you Peggy! It has been a horrible time, hopefully starting treatment is the beginning of better times ahead!
All of the lovely members of this site have helped so much throughout this entire journey and have given us hope when we felt there was none. We are truly grateful for that!
I just completed 40 rounds of Pemetrexed (Alimta), including six with the Carboplatin at the beginning, over a bit longer than 2.5 years. While I cannot say that my tumor ever went away, it did remain stable and the side effects, while not always pleasant, were manageable. I continued to work part-time and found that the busier and more active I could be, the better. Now I am preparing to switch to another treatment, quite probably Keytruda in a clinical trial unless a genetic mutation shows up to prevent my eligibility, in which case that mutation would be targeted.
The Carboplatin (and presumably the treatment would also involve Avastin or some similar drug to prevent the growth of blood vessels) was much harder on my system than the Alimta -- there is a reason people do not stay on Carboplatin very long, but it also does a very good job of knocking back the tumors.
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