Daughter with small cell cancer.

[jars1943]

Our daughter 56 years old has been diagnosed with superior vena cava syndrome. small cell cancer with abdomen involved. all in the last week. she started chemo Tuesday, 5/15/2018, 3 days on 3 weeks off until September. The tumor on the vena cava has shrunk some already. chemo is Carboplatin, and another that I can't remember. Surgery is not an option nor or they discussing Radiation. This very different than my lung cancer. I just would to know the best way to help.

[SusieJo1948]

Welcome. I don't know much. About small cell. I had non small cell carcinoma don't let yourselves get down. Have hope and faith. And keeping fighting don't give up. Susiejo1948

[Denzie Moderator Volunteer]

How devastating for you! She’s much too young to have to cope with this.

Likely the other chemo is Alimta or etopicide. Make sure she stays well hydrated and uses her stool softeners. After her 3d round of chemo they will likely give her a bit of a break and do a ct to see. how treatment is doing.

It would be a good idea to get a second opinion even though treatment has already started. One of these NCI designated cancer centers would be best.

nccn.org/members/network.aspx

[jars1943 in reply to Denzie]

Her oncologist is I understand also connected to the top cancer center in her area. We have mentioned a second opinion would be smart. I think once she takes more control of her treatment she will consider this. The second chemo is etopicide. She now has had her 3rd treatment and will 3 weeks off. Thank you for the info.

[Denzie Moderator Volunteer in reply to jars1943]

My treatment was Cisplatin/etopicide which was a bit harsher but with the SVC they seem to be making the best choice.

If things taste metallic use plasticware to eat, lemon drops, help get rid of metallic taste. Add a sports type drink to replace the electrolytes drinking extra water washes away.

Also, my hair thinned I never lost it all.

Best hopes!

[jars1943 in reply to Denzie]

I so appreciate your information. In October of 2016 I surgery for non small cell in my left lung. I had surgery and lost the upper lobe, but I am doing so much better. The challenge is get her to understand that she comes first. Thank you for your info.

[Lindajo44]

So sorry to hear this about your daughter. My husband was diagnosed with small cell lung cancer in February metastasized to liver and bone. Two cycles of the same two chemo infusions and the liver tumor is undetectable. This remedy seems to be the standard for small cell. So thankful that there are wonderful doctors available who do their best to stave off this invader. This forum is a great place to stay in touch with all those dealing with all types of Cancer. Hoping for a good outcome for your daughter. Keep looking up! Linda

[bellaella]

12 years ago when I was 58, I was diagnosed with small cell lung cancer. I had a lobectomy followed by cisplatin chemo, also 3 days on and 3 weeks off. has a slight complication at one month in. I had a blood clot in my lung and went on warfarin for almost a year. I am in remission now for 11 years, I wish your daughter the best. hang in there. it is a rough road but have faith

[jars1943 in reply to bellaella]

Thank you so much. This is very encouraging. I will gladly share this with her.

[FtB_Peggy]

Good morning, thank you for reaching out to this community, they are the best! We are so glad to have you with us again. So much that you and your daughter are carrying right now, please take care of yourself and I hope your daughter is patient with herself as well. I will private message you too.

[SusieAlta]

Hi! My mom had the identical diagnosis in August of 2017. She had SVCS as well as extensive stage SCLC. That was a very hard diagnosis. We went through a couple oncologists to find one who gave us the encouragement we needed. She began treaatment the day after diagnosis and was in ICU for 6 days resulting in pneumonia in both lungs as well as sepsis. That was 10 months ago and everything looked very bleak. She ended up doing 8 cycles of three days on and three weeks off (as opposed to the 4/6 cycles recommended by the original oncologist. She had a complete response after 8 rounds and is currently in remission. After 12 week scans everything looks great. It was after the 8th round and clear PET scan that our oncologist referred us to a radiologist and she had 25 doses of daily preventive radiation to the lung and we are awaiting 13 treatments to the brain as sclc is known to try to cause havoc in particular places. I never imagined my mom would be where she is right now and while I’m well aware of the recurrence rates of sclc I just wanted to let you know there is hope even though it may feel hopeless. Please let me know if I can answer any questions and tell your daughter there are also immunotherapy treatments on the horizon, she can fight this!

Susie

[jars1943 in reply to SusieAlta]

Susie thank you so much for this information. The doctor is doing the right things now but I do wonder about getting a second opinion. He has mention radiation to the brain as a precaution. But has not mentioned radiation to the lung or stomach. I think even though she doesn't mention it to me she has the opportunity to go to M. D. Anderson but I think she is worried about money. How did your mother feel during the treatments?

[SusieAlta in reply to jars1943]

Hi! I’m so sorry I missed this email! How is your daughter doing? My mom did extremely well with the treatments, chemo was actually fairly easy for her. The radiation was more difficult. I think if it were me I would definitely encourage any and all radiation that is available. There are some immunotherapy treatments being looked at for SCLC — but for second line treatment. I found something very interesting my mom’s oncologist said, when I asked him how long she could be on chemo and she said until she stopped responding, so indefinitely. I feel like the 8 treatments were extremely valuable as opposed to the usual 4-6 treatments. Please don’t hesitate to ask any questions and I’d love to hear any updates. I hope treatment is starting well! As far as a second opinion it feels like starting treatment is more important than looking at other options as the first line treatment for SCLC is fairly standard. Thank you!

onclive.com/conference-cove...

[jars1943 in reply to SusieAlta]

Hi, just to give an update. She had her port put in yesterday and will start her second round of treatment Wednesday. So far she is doing well. We shall see what this week brings. Thank you for all the information and I will try to keep you updated.

[SusieAlta in reply to jars1943]

My mom loves her port, that’s a smart move. I hope your daughter is doing well and chemo isn’t too difficult for her. Thank you for the updates, I’ll be thinking of you as you go through this journey. This process is very taxing on advocates as well, so please try to take care of yourself!

[jars1943 in reply to SusieAlta]

She just finished her second round, she seems to doing well. Her hair started falling out so she shaved her head. I always thought she was really cute with short hair. just made her eyes pop. I will be seeing her this weekend and am so looking forward to it. I have stayed away so that she and hubby could settle in with it all. That seems to have been a good idea, though very hard for me. We talk every day and I try not to overwhelm her with questions. Just trying to take one day at a time.

[FtB_Peggy]

Hi! If your daughter is thinking about a second opinion, please see: cancer.gov/about-cancer/man.... Great information to consider!

[jars1943 in reply to FtB_Peggy]

Thanks peggy. Did you receive my email?

[jars1943 in reply to FtB_Peggy]

Peggy, I have tried to reply via email. For whatever reason the emails won't go. could you give the email address again? Or is their another way I can respond.

[FtB_Peggy in reply to jars1943]

Good morning, I am so sorry, no I did not receive it. Please try again: [e-mail]. I want to help.

[jars1943 in reply to FtB_Peggy]

Received the packet of information yesterday. Thank you so much.

[FtB_Peggy]

Wonderful, and you are very welcome. Please let me know if you need anything else, and keep us updated!!!