HI All
I haven't been to Grace in awhile.....I'll update you a bit first.
June 2013 SCLC ext.
July 2013 Gamma Knife for 1 small brain met...no side affects from gk
started chemo/rad tx's which ended Nov. 2013
December 2013 showed Lung mass was Stable
March 2014 MRI showed 2 more brain mets.....CT scan still showed Lung mass Stable
April 30th 2014 went for Gamma Knife..found a 3rd brain met. all three were zapped after 1 hr 30 mins.
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May 2014
I can barely stay awake and so tired and weak...I can walk, do some earrands but I'm to tired to do more than 30 mins. I sleep alot.
I called the Rad Onc. said it wasn't GK it was all the steroids I have been on since March...I had edema and swelling in Brain so llots of steroids. I got a rash..horrendous rash and got zpak of steroids and steroid creme now~
I can't get anyone to talk to me about this or what can I do to get more energy!! I do have COPD also but was walking at least a mile a day before April's GK and of course 5 miles before dx of lung cancer! I am also coughing again and now my chest hurts when I cough where I was radiated..Is this called Radiation Pneumoniaitis?? If so, how do I find out what can be done for that? I am making appt. also with a Pulmonary Dr.soon
Is this my new norm?? My primary is working with me and wants to help...what could build me up a bit to feel better? Should I suggest PT to get muscle tone back? B12 shot you think? We won't bother the Rad Onc as he doesn't want to be bothered...my wife called the nurse yesterday and said take him to ER!! I am not in need of ER ...I just want some energy back...is this the norm for GK for 3 brain mets?
Perhaps if we understood and someone would explain we could accept and go on..but no one is doing that so far!! We have our hope on Primary which I see Sat. a.m. Any suggestions? would a bloodtest tell us anything....
Went through the roller coaster.....now what direction do we go in ?
Thank you in advance
Reply # - May 23, 2014, 11:38 AM
Reply To: Side affect after Gamma Knife??
Dear hartstogether: I'll let those with more expertise answer your medical questions, but I want to let you know that you will feel better than you do now! You should also know that a common side effect of all the steroids is depression, so tell your primary that, and ask for advice about what to do. It's hard to keep your spirits up when you're feeling lousy, but ask for help. Ask a friend or relative to take you out for coffee, or to a movie. Walk in a park to the extent that your energy will let you. Find a funny show or movie on TV and watch it, whatever works for you to keep your spirits up, even if you don't quite feel like it. We're all pulling for you, and we've been in lousy places ourselves, and know that things do get better. I'm thinking of you, and hoping things work out with your dr. tomorrow morning.
Nan
Reply # - May 23, 2014, 06:15 PM
Reply To: Side affect after Gamma Knife??
I agree that it's very unlikely the side effects are due to gamma knife, but you've already found that getting gamma knife to brain lesions for SCLC and not doing whole brain radiation (WBR) leaves people very vulnerable to later brain metastases. We know that brain metastases are so common in SCLC that if someone already has evidence of one or more brain metastases, they are extremely likely to have more over time if they don't get WBR. So progression in the brain may be a cause.
Coming down on dose or stopping steroids might also be a cause, which can be tested by increasing the dose of steroids and seeing if things get better.
Otherwise, it's possible that progressing cancer somewhere in the body could be reducing your energy level -- this can be checked by repeating imaging if that hasn't been done in a while.
Having your salt levels out of balance, specifically having a low serum sodium level, is also common in SCLC and can lead to major fatigue, as can a calcium level that is out of range and can happen with many cancers. A simple blood test could look for that.
Fatigue can be caused by many things, alone or in combination, so your doctor will be in a better position to try to determine the most likely cause(s) of your low energy.
Good luck.
-Dr. West
Reply # - May 23, 2014, 06:17 PM
Reply To: Side affect after Gamma Knife??
Finally, radiation pneumonitis is inflammation that occurs in the lungs after chest radiation, especially combined with chemotherapy. It typically occurs weeks to months after radiation is completed and is associated with shortness of breath, a cough, sometimes a low grade fever. You can learn more about it by searching for the term in the search box at the top of the page.
-Dr. West
Reply # - May 23, 2014, 06:17 PM
Reply To: Side affect after Gamma Knife??
Finally, radiation pneumonitis is inflammation that occurs in the lungs after chest radiation, especially combined with chemotherapy. It typically occurs weeks to months after radiation is completed and is associated with shortness of breath, a cough, sometimes a low grade fever. You can learn more about it by searching for the term in the search box at the top of the page.
-Dr. West
Reply # - May 24, 2014, 11:26 AM
Reply To: Side affect after Gamma Knife??
Thank you all for responding. I did go to my primary Dr todaresearchs, luckily hee works Sat.!!
I started a low grade fever yesterday....have a rash along with mentioned issues..
Doc gave me antibiotics and sent me for a blood test...results will be in Monday to see if anything isout of kilter.
Yes, having sclc w\ brain met. in the beginning of dx let us know there may be future mets. My Rad Onc mentioned wbr and suggested not to have wbr due to less quality of life. He mentioned most that come to him with sclc ext were not as healthy as I was at the time--that wasJuly 2013. My wife & I wew just learning what this journey entailed.
So total I've had 4 brain mets so far and know it's possible to have more. I have read where some who had sclc ext had wbr & end up having well over a dozen mets---1 has recently passed away..I guess no matter what we do for preventive--there is no guarantee..
I will keep. you. posted on my results from blood work.
I will research more on radiation pneumoniaitis..Doc said today not much to offer..it goes with radiation treatment....just wish the cough would ease up as that is causing pain in radiated lung..(that territory again)
Thank you again-
Don
Reply # - May 25, 2014, 05:41 AM
Reply To: Side affect after Gamma Knife??
It is true, there is a lot of of uncertainty with this disease. Personally I think that the "oligometastatic" term applies much less often to extensive stage small cell lung cancer. My understanding is that small cell is a systemic disease from the beginning, and the mainstay is systemic treatment.
Sometimes it seems like the biology of the small cell is what really determines prognosis, more than our treatment does. For example, here is a case of a woman who had a stable small cell with a brain met for 14 months with no treatment at all.
http://www.sciencedirect.com/science/article/pii/S0169500210002175
Reply # - August 31, 2014, 07:26 AM
Reply To: Side affect after Gamma Knife??
Greetings--wanted to catch ya up todate---
This is August 2014--
I now have hypothroidism due to radiation to thyroid--on hormones--adjusted twice up tp 137 mgs.
I've had a total of 7 brain mets since 1st Dx June 2013--with 3 Gamma Knife procedures.
My stable mass for 7 mths is showing activity but no progression!! Suv 7.8 -7/2014 yo Suv 10.8- 8/2014 !
I've been treated for bacterial infection in lung--don't have a handle on that yet---
Have restared chemo in July-carbo/etoposide 2rounds so far.-have 2 more to go.
I have shown in blood test to be very anemic the last draws but no on suggest anything for it--Onc said plateltes really low--then got my chemo!
Today--my fatigue is worse than ever--I am weaker-and do nothing but sleep--eating some then sleep again!!
I know this could all be a combo of-
Hypothroidism
Low platelets
Chemo
Gamma knife
Or the increased suv!!!
Onc appt is in 2 days-Sept 2nd--for blood wrk-chemo---I don't feelup to 3 daysf chemo!!
I!ve recently started coughing up thick flim with flecks of brown or red--not a lot for a week.
My copd/ emphemsa has me so shortwinded now
Can I reversve any of this--just having energy to stay awake would be good!!
My wife wants to 'fix it. got me Boosdrinks-Gatorade drinks---
Any suggestions to bring up to Onc that I didn!t just mention-? For Tuesday ?appt
Thank you for your time
Don
Reply # - August 31, 2014, 11:49 AM
Reply To: Side affect after Gamma Knife??
As you suggested, there are likely many contributing factors, but low blood counts and recent chemo are readily reversible ones. We routinely hold chemo for people who are too fatigued to manage their activities of daily living, as well as for those whose counts are so low that additional chemo is liable to put them at excessive risk.
There are medications like Ritalin (methlyphenidate), Provigil (modafinil), or steroids that can increase energy a bit, but it's still unwise to pursue chemotherapy when a person is too weak or blood counts are not high enough to drop without getting to very unsafe levels.
Good luck.
-Dr. West