Newly Diagnosed

[Deirdredoll]

I am 65 years old diagnosed end of June 2023 with SCLC lower right lobe and lymph node.  Went to ED with dry cough and shortness of breath and admitted for 8 days.  Port placed and chemo started immediately with Cisplatin and Etoposide.  Fortunately MRI showed brain clear, but waited weeks for PET scan of liver which is also clear.  Second round of chemo and Durvalumab added to other two this time.  Side effects have been really bad.  Since chemo started I have been too weak to do much of anything.  Am on 2 liters oxygen and have been focusing on increasing fluids and nutrition.  Calcium and magnesium low and have been infused twice for magnesium.  Radiation to begin for 6 weeks on same day as next round of chemo July 10th.  I’m dreading even more side effects.  Finally spoke to social worker who recommended having % of chemo reduced to help with side effects.  I am miserable and thought I surely should have some reprieve between treatments?  I’m not sure of my prognosis but have been told by oncologist of 70% cure rate?  Appreciate any suggestions.  Thank you!

[Sallysh]

I’m sorry you have such side effects. I had radiation and chemotherapy at the same time. The radiation did not add anything to side effects but fatigue and some difficulty swallowing that was temporary.  I had nsclc cancer in upper leftI lobe with lymph node outside my lung .          I only  had one round with cisplatin which was too hard on my kidneys so was changed to carboplatin with the etoposide. Less side effects. Fluids really do help although it’s hard to force them I know. I’m just on durvalumab now for the next year. The good news is the chemo and radiation worked and the tumor is much smaller and less active. So hang in there. Best always

[Tom Galli]

I understand miserable. Any kind of chemotherapy is challenging and you are having combination chemotherapy (Cisplatin and Etoposide) plus Immunotherapy (Durvalumab). This is an emerging standard of care for Small Cell Lung Cancer (SCLC). 

Your fractional radiation (30 daily treatments) should not add to your chemo side effect burden, but you will experience fatigue and it could be extreme fatigue starting in week 4. Radiation is very important because it is the tumor-killing component of treatment.

My chemotherapy (Taxol and Carboplatin) affected my Calcium and Magnesium blood levels also. My medical oncologist suggested I take oral supplements for both of these minerals. I continue taking Magnesium to this day. I'd ask your medical oncologist about oral supplements for these important minerals. I'm not sure I would ask for lower concentrations of chemo. SCLC is so dangerous because it often recurs and the conventional drugs sweep the blood and lymphatic systems of cancer cells. Immunotherapy trains your immune system to recognize cellular lung cancer and destroy it before it can form a tumor.  You want to ensure every single cell is eliminated.

Our gold standard for successful treatment is the attainment of no evidence of disease (NED). Here is an explanation of various terms used to describe treatment effects. I hope your chemo-radiation results in a NED scan and I hope you surf the NED zone for a very long time. Combination chemotherapy is dramatically changing outcomes for SCLC. 

Stay the course.

Tom

[Pstar]

I was diagnosed with LS SCLC in Nov of 2021. I had a nodule in right upper lobe and hilar lymph node involvement. I had 4 rounds of chemotherapy with carboplatin and etoposide and 30 daily radiation treatments. Maybe you can speak to your oncologist about switching to carboplatin in place of the cistoplatin as my side effects were just tiredness and one bout of constipation. It is really important to stay hydrated. Radiation side effect was some heartburn and difficulty swallowing which went away shortly after treatment. I was not offered any immunotherapy so can’t give you any advice.

[LilyMir]

I am so sorry you have to join us but welcome to this great forum! I have a different type of lung cancer but also was given Cisplatin. I hated it with vengeance as it gave me the most horrible (and serious) side effects and the oncologist promptly changed it to Carboplatin for the rest of the chemo cycles, and also reduced dose. IT was day and night difference for me. I have no idea if these are options for your type of cancer but ask your oncology team and make sure they know exactly how your body is responding; chemo should be hard to kill cancer but we don't want it to kill us too 😅. If you don't complain about side effects they assume all is good and do not work with you on side effects so make sure to tell them everything.

Blood work should be regular and any serious out of range values are usually addressed whether it is by delaying the next chemo session a bit to give your body time to recover or by giving treatments for whatever is out of range.

I hope your oncologist is lung specialist not a generalist, if not, maybe find one.

Also, adding a pain and symptom management doctor is key (in US they may be called palliative care).

Hang in there. Chemo is horrible but it passes. You got this!

 

[Karen_L]

I'm with @Pstar on the thought that they might be willing switch from cisplatin to carboplatin. That seems easier to tolerate for most folks. I am NSCLC, which has a whole different set of treatment protocols, but you never know. I was also a durvalumab girl, which was not a good match for me, but it is a great thing when it is effective for patients. I have a drawerful of anti nausea meds and was encouraged by the nurses to not hesitate to use them, even as preventive. 

I had about 5 weeks of daily radiation and was very lucky to have had minimal side effects-- except wicked exhaustion. Best thing I did to cope with radiation was try to stay active. Early on, that meant getting up. Eventually, trying to walk up the stairs. I also bought a blender; smoothies are now part of my regular routine. I also was prescribed swallow therapy-- who knew that was a thing-- in the event of esophageal side effects. (I had hilar nodes, which are right next to the esophagus, so radiation burn was a concern.) I have a drawerful of preventive meds, which I was lucky enough to not need. 

My philosophy is just say yes to every med they offer. Do you have a palliative care specialist? They are miracle workers when it comes to helping cope with treatment. The social worker ought to be able to help set that up. 

Don't give up-- many people find their body adjusts to chemo over time. We can hope that is true for you!

Keep us posted,

Karen