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small cell remission

chad76's picture
chad76
Posts: 52
Joined: Jun 2010

My wife finished her fourth round of chemo july 2nd and did 5 weeks of lung radiation..she went monday and had a pet scan and the doc said that her 5 x 5cm tumor was gone and in remission...they did not see any cancer on the pet scan..only one small spot on her lung was hot and the doc said that it was caused from the radiation and not her tumor! She is starting brain radiation in the morning!..I hope and pray that linda"mywife" stays in remission and this nasty illness never comes back!...I would love to hear from other small cell survivors...thank the lord for this wonderful news!!

medi_2's picture
medi_2
Posts: 506
Joined: Aug 2009

I'm a sclc survivor of 1 1/2 years and other than some occaional freak-outs i'm doing just fine. just keep living your life as joyfully as you can!
Happu Friday!
Medi

hope0310's picture
hope0310
Posts: 324
Joined: May 2010

My mother is in remission from SCLC. She was dx March 1st 5cm tumor plus mets to brain. She had 12 brain rad, then it moved to spine, so 12 more rad, then 3 rounds of chemo. Currently there is no active sign of the cancer.

Fight the good fight!!

My best to you and your wife!

pkaz53
Posts: 84
Joined: Nov 2005

Way to go Linda everyone on this board is celebrating. I am a survivor of sclc 6yrs and bladder cancer 8yrs --Think I'll do the curly shuffle in honor of you tonight --WAY TO GO -
I will keep you in my prayers, Paul

chad76's picture
chad76
Posts: 52
Joined: Jun 2010

Thank you all...my wife is once again happy!!..let's hope and pray for a cure for this sickness..thank you and may god be with you all!

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Hello Sir, I am luz del lago's husband and I have extensive sclc stage 4. I have completed 5 sessions of chemo and in two weeks I start my sixth and final session. It has all been pretty uneventful with the exception of a little fatigue after sessions 4&5. No nausea, no vomiting, and the cancer has continued to go down at a 50% or better rate after ctscans, because I have tolerated everything so well, is why my dr. has decided on 5&6 in attempt to reduce things to, no noticable cancer cells. Then she recommends pci. This is where I have a problem, deciding on pci or not at all. A very interesting study comes out of Rush University in Chicago that recommends only partial avoiding the areas where mets come at a rate less than 8%. These areas are the important areas that deal with memory, balance, etc. My question is what made you decide to do pci? I have had one mri near the beginning of treatment and it showed no brain mets as did a bone scan show no bone mets. Of coarse I have been told that my next mri of the brain will be in conjunction with pci. No mri of brain if I don't do pci. I have already talked with the Radon and probably will again before I decide will I or won't I. What are your feelings on this subject. Thank you for your honesty and assistance.

pkaz53
Posts: 84
Joined: Nov 2005

I was diagnosed with sclc limited stage in 2003-my doctors recommended that I do the pci, for me, the decision wasn't hard to make since I already had the bladder cancer 2 years earlier.
The information that you are reading about side effects for me is true I have some memory problems,balance,fatigue,hearing loss and other issues --part of this is also from the chemo.
It gets frustrating sometimes with the memory issues I have to think things out---I always thought I would return to the way I was before treatment the longer I was away from it-- but that hasn't happened so this is what they call the new normal --I am so thankfull to be here 6 + years later ---For me the options were unacceptable-

Have you checked into proton therapy?

Good luck and may God Bless as you go through your treatments

chad76's picture
chad76
Posts: 52
Joined: Jun 2010

Are you taking any special herbal supplements or special vitamins?..would love to know what you are doing to stay healthy and keep this illness from coming back!....thank you

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

My husband and I have read your blogs and are so happy for you and your wife! My husband has also been diagnosed with extensive sclc and has undergone 4 treatments, he is currently having his 5th. The last CT scan showed 75% overall reduction in the lung mass and masses in his liver. Oncologist recommended the 5th and maybe the 6th treatment as he has tolerated the chemo so well, although he did have to wait a week before this round because his neut# was too low, but thankfully it went up on it's own and he had chemo today. We have begun the discussion with radonc on PCI. Some survivors say don't have it, some say, do it. Of course, his oncologist recommends it, as does the radonc. Was that a difficult decision for your wife and you?

If your wife, and you, wouldn't mind, could you share with us how you all came to the decision? And how she is feeling now that she has begun the radiation? Perhaps it may be too personal, and we don't wish to intrude, but if you wish to share, we would be extremely grateful.

May the Lord bless you both.

chad76's picture
chad76
Posts: 52
Joined: Jun 2010

Thank you for your reply....my wife and I really just went with what our docs both said about the pci...they both highly recommended it..we have two
docs that we really like and trust..as far as her health with the pci it is ok..she has only had two so far..she has 16 more to go...the worst part for her is putting on the face mask and having her head screwed down to the table..it really scares her...we both felt that this was the best choice to do rather than wait until she had a tumor in her brain..she is a very strong person and has bounced back very fast from chemo..she started out around 125 lbs at the start of treatment and only got down to 121lbs during and is now up to 132lbs.....I hope that your husband gets a full response and soon!...the stress is the worst part of this illness..at least I think so...I will keep you both in my prayers! I will try to answer any questions that you have!...be strong in your faith because good things do happen!...sending much strength and many prayers your way!

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Thank you for your response and for the words of encouragement and prayers! I think we too, will put our hopes and prayers in the trust we have in God and my husband's doctors. We have believed in them ( doctors) up to now and they have always been honest and upfront. We send continued prayers for the both of you, and that soon there will be more time to live, laugh and love.

Laurie63
Posts: 1
Joined: Aug 2010

My Father (69 years old) was diagnosed with SCLC mets to his brain in March. I am beyond devistated and scared. I've read so much on the internet that there is just no hope. He just finished his 6th round of chemo. Prior to that he had radiation on his brain. I pray constantly that he goes into remission. He and my Mother were supposed to retire this year. He goes in for testing to see if the chemo, etc. worked next week.

After reading the comments here, I feel maybe there is hope. I'm so happy for all of you who are having good news and will pray for you as well.

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Sending prayers and good wishes your way! We hope that your wife is feeling well and tolerating her radiation. We are looking to my husband's 6th and last chemo next week, and going to celebrate his 61st birthday with such joy and hope!

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Luz & chad,
I just want you to be aware that the side effects don't show up right away - I didn't notice any difference for a few months, and then I suddenly realized I was having to hunt for words and having problems remembering things right away, unable to multitask effectively, distractable, and constantly transposing letters when I typed.
My hearing may have been affected, too, although its possible the Cisplatin I had as a first-line treatment is responsible for that.
Anyway, think it through carefully...
Best of luck to you all,
stayingcalm

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Thank you, stayingcalm. We have done endless research, spoken to Radiology Oncologist, visited with survivors that chose to have PCI, those who chose not to, read and shared with the wonderful people on this site, and prayed fervently for guidance and grace to make the "right" decision for us.
Know about all possible immediate and long term side effects. Basically been told by Rad/Oncologist " if you come back in two years with any complaints, I'll happily listen to you". I guess we can read between the lines, and considering the statistics, it would be great to be able to come back in two years! Although, we are not going to live based on statistics!! We refuse to!! And we want to be able, in every sense of the word, to live as good a life as we possible can.
We have found a study that began about 2 years ago at Rush University in Chicago, where they were using a " TomoTherapy System " to selectively reduce the dose of radiation to the limbic circuit, while treating the rest of the brain at full dose. We found a report in Science Daily (Nov. 10, 2009), went to the Rush website, got in contact with the Director of Trials, and are now waiting for contact from the Doctor that is doing the research. We don't know at what stage the study is in, or whether they documented good results, but if it could be done (PCI) protecting the "hippocampus and limbic" areas, my husband says he would gladly have it done!
Thank you, again, and you are in our prayers also.
Luz del lago

medi_2's picture
medi_2
Posts: 506
Joined: Aug 2009

Deb is right, these symptoms sometimes take awhile to show up. Mine slowly built up until I was a complete wreck. Couldn't remember anything...everything was hard. I was afraid to drive and get lost in grocery stores. I couldn't stand it anymore and asked me doc for some drug to even me out. i would probably still be nutso but calmly so ;).
BUt! My symptoms have been slowly fading away. As with Deb, my hearing still bugs me but I had Cisplatin also. I am not so jumbled anymore, I can complete a task before wandering off to do another. SO things DO get better. Give yourself time; you have been in a great war wiwth something you don't understand. The fact that you can relate to other people and share your problems is a good step. Keep in touch!
Medi

chad76's picture
chad76
Posts: 52
Joined: Jun 2010

Thank you stayingcalm for the heads up on the side effects..hope that you are doing well..take care

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Hi Chad and Linda. My husband, Dennis and I, have been praying for you both. How are you all doing? We haven't seen a post for awhile. We can imagine that you are recovering from PCI, and resting and enjoying time together! Dennis just completed his final chemo session last week. He did very well. And now is resting and regaining his strength. We will be seeing Rad/Onc next week, and discussing the procedure one more time. We are also waiting for 2 weeks from now for CT scan and brain MRI.
Take good care, and know that you both are in our prayers!

chad76's picture
chad76
Posts: 52
Joined: Jun 2010

Thank you for the prayers!...Linda is recovering pretty good from the pci...she has had a few small side effects so far..it has mainly just been headaches,some fatigue and her head is burnt..looks like a bad sunburn..other than that things have been good!...very glad to hear that Dennis is doing well..hope that all goes well with the scans...Linda never did get a mri they just did the ct/pet scan...I still worry about the hot spot in her upper lung,but the docs did not seem to worried about it and we do trust them...I just wonder if anyone else had that on their pet scans...we will continue to keep you in our prayers and please keep me posted and I will do the same!...take care

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

So happy to read that Linda is doing well after PCI! Our prayers and best wishes continue to be with you, both. When Dennis or I have a concern or question about a lab or report, we ask the Onc. about it. Sometimes several times! Thank goodness she's patient, and always answers the question or explains. With all that we have to think about these days, we figure, if something can put our minds at ease, ask, ask, ask, until we feel that we fully understand or are satisfied with the information.
We hope that everything continues to go well. Take care. Look forward to more good news from you in times to come!

chad76's picture
chad76
Posts: 52
Joined: Jun 2010

I love your profile pic!.....my heart goes out to you!

62 in Arizona
Posts: 1
Joined: May 2011

I am on my 2nd of 6 rounds of chemo and then they want me to do 2 - 3 weeks of PCI - 5 days a week for 10 min. I had my upper right lobe removed, all cancer removed, no cancer in lymph nodes, bones or brain. I am also scared to do the PCI - I still work and the memory loss and concentration would be difficult. But I want to beat this cancer and lie at least 10 more years, so I am thinkig I will have it done and hope the benefits out weight the side effects.

chad76's picture
chad76
Posts: 52
Joined: Jun 2010

I will put you in my prayers! Most of the side effects are short term with the pci that my wife had...In my mind it is well worth it but that's just my 2 cents! ....thoughts and prayers your way!

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