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Small cell


Michele

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Hello I like to know is there anybody here with small cell. My husband was just told his right now is limited. Can u live long with small cell. Are there any people here. He starts chemo in 2 weeks.if there is no cure then what do u do. Please help I'm trying to be strong

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Michele I am glad to hear that your husbands SCLC is said to be Limited. That is great news.

I never had SCLC but I have friends that have had it.  My friend Janet was treated with chemo and radiation

over 15 years ago and is still doing well.  I hope your husband also responds well.

 

Donna G

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Michele,

I've know many SCLC survivors who've been successfully treated.  Unfortunately, like any form of lung cancer, I know of those with small cell who achieved NED (no evidence of disease) but experienced a recurrence.  And, I know of those whose treatment did not have an effect.  Most importantly, all of my small cell acquaintances were before the emergence of new treatment method of immunotherapy.  You can read about it here and here.

We don't use the word cure in the cancer community.  Regardless of type of lung cancer, it recurs frequently.  I still see my oncologist two times per year and I've lived more than 13 years after diagnosis.  So, extended life is achievable but no one knows how long the extension will be for any lung cancer patient.  

Stay the course.

Tom

 

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  • 2 weeks later...

Michele, like you I am now on this journey with my husband. We have hope but we are also realists. Right now I am grateful for everyday past 6 weeks. 2 rounds of chemo down and once the initial shock wears off you take one step at a time one day at a time. There are so may UNKNOWNS like waiting for test results. Thank God the hospital has a place where we can get results quicker than the dr's. Do I have days where I am overwhelmed? Oh heck yes! Am I worn out? YES! Did I stop by my primary care Dr to get a B12 shot? YES! And I feel much better after 3 days. We are in this fight together and we stand united in front of family even when they disagree with us. It is our path and our choice not theirs.

 

Peg

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Thank you Pegi for your insight. My husband starts chemo Monday for 5 hours then Tue wed not sure how long for those days .I just don't know what to expect. I have my job on hold for now to see how he reacts to chemo. When 2nd round of chemo starts next month he will start radiation 2 times a day. Ive been trying to stay the course but my nerves take over. Really don't have anyone to talk to so thank you for responding. Michele

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Michele of course the weekend is here and any questions you may have for Monday cannot get answered. Pack him a small bag. Book, computer, tablet, maybe some Gatorade, some favorite munchies. I know we walked in with no basic knowledge of what was to happen. Pretty scary. I made sure I fed him before we went..Our cancer center does supply munchies and water and warm blankets if needed. They are going to do a blood test first. Then if prescribed they will give him drugs to help prevent nausea and then comes the chemo. 1st day is always longest. Next 2 days are shorter. Our tech was awesome and she answered every question I had written down. I do not go there without my notebook. My husband always reminds me if I forget. Do not be afraid to ask for printouts for the drugs and other procedures.You have the weekend write down all those questions.

Unfortunately I have files for everything going on. It also helps you to keep a journal of this journey. the journal will also help you vent. I am not working right now and I cannot imagine having to work and do this also. Lee collapsed @ work and that sent us to ER and that was the start of our journey. This hit him hard and fast and thru it all he simply amazes me.

I pray your husband has no nausea which for us has been a Godsend. Hard enough dealing with all the other stuff without that too.

 

P.S. You are human those nerves are gonna be pushed to the limit. I have yelled and screamed at some family members for some of the stupid stuff they have pulled. Lee and I are a team and you either get behind us or get left in the dust. I no longer have time for any kind of drama.

Hugs & prayers!!! God is always working even when we think he's not there.

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2 hours ago, Pegi said:

Michele of course the weekend is here and any questions you may have for Monday cannot get answered. Pack him a small bag. Book, computer, tablet, maybe some Gatorade, some favorite munchies. I know we walked in with no basic knowledge of what was to happen. Pretty scary. I made sure I fed him before we went..Our cancer center does supply munchies and water and warm blankets if needed. They are going to do a blood test first. Then if prescribed they will give him drugs to help prevent nausea and then comes the chemo. 1st day is always longest. Next 2 days are shorter. Our tech was awesome and she answered every question I had written down. I do not go there without my notebook. My husband always reminds me if I forget. Do not be afraid to ask for printouts for the drugs and other procedures.You have the weekend write down all those questions.

Unfortunately I have files for everything going on. It also helps you to keep a journal of this journey. the journal will also help you vent. I am not working right now and I cannot imagine having to work and do this also. Lee collapsed @ work and that sent us to ER and that was the start of our journey. This hit him hard and fast and thru it all he simply amazes me.

I pray your husband has no nausea which for us has been a Godsend. Hard enough dealing with all the other stuff without that too.

 

P.S. You are human those nerves are gonna be pushed to the limit. I have yelled and screamed at some family members for some of the stupid stuff they have pulled. Lee and I are a team and you either get behind us or get left in the dust. I no longer have time for any kind of drama.

Hugs & prayers!!! God is always working even when we think he's not there.

Thank you Pegi for your insight. My husband starts chemo Monday for 5 hours then Tue wed not sure how long for those days .I just don't know what to expect. I have my job on hold for now to see how he reacts to chemo. When 2nd round of chemo starts next month he will start radiation 2 times a day. Ive been trying to stay the course but my nerves take over. Really don't have anyone to talk to so thank you for responding. Michele

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Oh my Pegi  I had tears with your thought fullness no one told us anything .thank you! I am concerned about one thing when they called to confirm the appointment they first said he needs to get a blood test then said no wait the doctor said in notes do not need one because last blood test was 18 days ago.then she said hmmm I never seen anybody not get a blood test sooner before chemo. So when we get there I have to question that.Pegi did your husband start out with limited stage? Our chemo doctor says it incurable but the radiologist says it can be curable at limited stage.wondering who's right. I will give u an update ; and again thank you so much! God Bless

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Hi Michele,  My lung cancer was non-small cell and early stage, so  I didn't have to have chemo or radiation. I did have concurrent chemo and radiation, plus some additional chemo, a few years ago for a non-lung cancer that was advanced and aggressive. My chemo experiences may not be the same as your husband's, but probably some similarities. Pegi's advice about what to take and what to expect is excellent. My partner went with me to the first chemo to see how I

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Me again. My post got sent before I was done with it. I was saying that my partner went with me to the first chemo to see how I would do with it and what support I would need. I had side effects, including nausea, but fortunately not right after my chemo session, so I was able to drive myself there and back  for all the rest of my chemo and radiation. The nurses at the infusion room were nice, and the radiation center staff, who I saw 5 days a week, were even better! Very supportive and helpful. 

I am now NED (no evidence of disease, in case  you haven't run into that term yet) on 3 separate cancers. My lung cancer was discovered very early on a routine CT that I had to wach for metastases from my other cancer. On that one, the prognosis was not good, but statistics are just generalities, and each of us is an individual, so here I am feeling good today after 6 years! 

I believe in hope and living for today. I wish you and your husband all the best.

Bridget

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Hi Bridget I'm so glad you are Ned. I too am Ned .I had non small Aden 7months ago had vats surgery lower lobe.its just so ironic that now its my husband turn but his is so much worse.not only that my brother has stage 4 non small lung cancer. His level on pain is 10 .I was so happy the last 6 months being Ned but now I'm right back in the world of cancer.I will stay the course! Thank you for your note it does help.

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My friends husband was diagnosed at age 65. He lived for 7.5 years after chemo, radiation and PCI (prophylactic cranial irradiation). He died of causes not related to his cancer or treatment.


Sent from my iPhone using Tapatalk

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Michele, Lee is advanced Stage IV small cell metastasized to liver.They tell us not curable BUT containable. The objective is to kill and shrink tumors. They told us to get our ducks in a row. We have already told DR when it comes to quality of life we will decide what is best for him. They gave him 6 weeks w/o treatment. Nothing is guaranteed. Right now I take each day it comes. He does continue to deteriorate (weakness). He lost ALOT of muscle & fat. We had a trip to ER this morning. Rectal bleeding. Has another Dr appt for that on Thursday. They say hemorrhoids BUT I have never seen so much blood from that. Just another bump in the road.

had a new set of wheels delivered for him today. Walker. It helps alot even getting into and out of his recliner.

You have a good list of questions started for tomorrow. USE THEM ALL!  Keep us posted! Hugs & prayers.

Peg

 

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Peg,

I'm also sorry to hear of the advance. Some would say no lung cancer is curable. In fact, it has such a high probability of recurrence we use the term NED (no evidence of disease) rather than cure. I hope his new treatment routine contains the cancer.

Stay the course.

Tom

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Hi Peg thank you for asking. The first 2 days of chemo have been long days.we have to drive hour and 20 minutes to get there due to having to go to the VA yesterday he came home and went straight to bed he was so tired. Today is 3 rd  day we will be leaving in a hour .he is glad its the last day. They are giving him cisplatin and etoposide.so far he is doing alright except for fatigue and getting constipated so I have to get prune juice. I guess this weekend side effects jump in ;hopefully he doesn't get them.he was told to stop taking blood pressure meds Cuz it dropped to 85/44 so they had to give fluids before chemo yesterday. I appreciate your concern and I will update  his progress thank you so much.  PS. How is your husband doing?  Sincerely Michele.

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Michele, Been a rough week and family just made it worse. Lee's fatigue is about double of what it was. I hope the side effects do not kick in for your husband. Some of them are pretty nasty. Keep us posted.

 

Peg

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Peg I'm so sorry your family is giving u hard time.they should be there for you! I'm also feel bad that your husband is more fatigued. I'm hoping you are OK! Its hard its only our first round series and it already kicked him in the butt.off for 3 weeks could only imagine what's ahead. I will keep praying for Lee along with mine.

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Michele, I pray you get 3 complete weeks to regroup. There never seems to be that time between other Dr. appt and all the other stuff that comes up. Today I had GoDocsGo here for what was supposed to be a home evaluation to see what someone can do to help him. I was not comfortable with them and they wanted me to sign ppwk before they even got started. I have done a google search on them and they have some pretty crappy ratings. One person tells me one thing and another has a different story I am confused enough and do not need this. They could not even tell me what DR signed the order which really had the red flags flying. I had talked to our primary care Dr. yesterday and he was not even aware of this. So much for communication. He did advise me NOT to sign anything. There are SOOOOOO many scams out there. 

i pray your husband is settling down. I pray for God to give you the strength you need.

 

Peg

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Peg did u figure out who sent those people over.that was scary.! Can I ask what state your in? Today was a better day just one appointment close by. Next one is Monday for MRI. Rog got tattooed today for radiation he was wondering why they did both sides of the ribs which he forgot to ask. Do u know why? This weekend I hope we can just chill.I hope your husband is feeling a little more strength today. Has the tumor shrinked at all since treatment? Hope your OK too! 

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Michele, So far no luck figuring out who sent those people. Sooner or later it will show up. Lees cancer is I guess so far advanced that they are only doing chemo with him. Do not know about shrinkage yet. It is on my list of ??? for Dr on Monday. Actually weaker had an appt today with a colon & rectal surgeon. Seems he has a rectal fissure and it is quite painful. They really could not do a complete exam. Sent us home with more scripts and he is to return in 3 weeks or earlier if it worsens. Worse case they put him in hospital and knock him out to do a complete exam. They kept asking us about constipation. I told them the problem was diarrhea for the last 3 months before he was diagnosed with cancer. So even diarrhea can cause fissures and chemo makes it worse. We live in Southfield MI.

I hope by chilling this weekend you do not have a revolving door for visitors. I just want one day not to do anything. One day at a time one step at a time....... I bet Tom would know why they did both sides. for the tattoo.

Take care,

Peg

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Peg .u sound so strong going threw this.I don't think I'm strong.I've been in Florida going on 4 years. I have some friends from work (associates) and my one good friend is in Michigan for the summer.she tries to give me support on the phone.other than that won't have to worry about visitors right now. People are trying to scare me about chemo saying that will kill him before the cancer but I let it go in one ear out the other.I took care of my dad until the end and after it gave me post traumatic stress on death. Peg I'm so afraid my fear tears me up inside but I have to stay the course as Tom says Lol.my husband has been sleeping since 630 and that's generally not him.I really feel all alone in this.I ask for strength! This all saddens me for everyone fighting cancer.oh well sorry to ramble! I hope u have a better day tomorrow.keep in touch michele PS.I press submit and sometimes it won't submit have to press ten times don't understand!

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