Trying2Bcalm

On Mar 06, 2013 12:28 AM Faith4him wrote:

My husband also has stage 4 melanoma, started in a mole . Progressed to lymph nodes, moved on to bones, and liver, today we found our he has multiple tumors in brain. Starting radiation in tremador this week. I needs some hope. I'm numb. Has anyone else had these procedures and had tumor shrinkage?

So sorry to hear about your husband.  So far we have not had to deal with any lesions on the bone.  Fifteen months ago my husband went thru whole brain radiation after surgery to remove a tumor.  Then had cyber knife on two other lesions that showed up on original scan.  He did fine for about 6 months...then two more brain lesions and one on the lung.  He did cyber knife again - for the brain and lung.  About 3 weeks ago he started having stroke like symptoms - he had hard time talking and could not write his name...I got him to the hospital. The cause of the symptoms were from one of the original lesions that were cyberknifed - now is on steroids again to lessen the swelling.  This is something that we have had to deal with daily since the beginning.  the cyber knife does kill off the cells of the tumors but also have the chance of turning into necrosis.....no one told me what the necrosis would do - or maybe they did and I was to busy hoping that the cyber knife would save him.  At this point the streroids is all they can offer him except for surgery to release the pressure in the brain.  All through this he has had no headaches or other symptoms of brain tumors.  The only symptoms he does have are from the side effects of the steroids - hoarsness of the throat and weakness in his legs.  Hang in there girl - lots of good days and some bad days but everyday is a good day in some way.  Please let me know how your husband is doing.

So very sorry to hear about your son - I will keep him and his family in my prayers.  I don't know anything about the medication you mentioned.  My husband tested negative for the BRAF gene.  I hope it works out for him in Tampa. 

I agree that it is a BEAST!  Today he had an appt with the dermatologist and he froze off some places on his back.  He gets tired of me 'watching' him - haha.  I haven't slacked up on my part of watching for symptoms.  Still not gaining weight though - but we  are looking into that maybe being a thyroid issue.  Should know later this week.  Grateful for each day.  Bless you all -

Congratulations! and I hope this will be my husbands story in 2 1/2 years.... :)  Thank you for the link you sent - but he is not a candidate for that trial.  He doesn't test positive for the BRAF gene...or chemo unless it spreads to another part of his body. The only one they have suggested is the IL2 or IL3 if it locates elsewhere.  His is located in his brain so far. Surgery was done to remove a large tumor and then WBR.  They cyber knifed 2 other lesions and they have started to break up.  Our doctors are at Centennial Hosp in Nashville and The Sarah Cannon Cancer Center.  So far everything that they have done is spot on from the information that I have gathered.  My best wishes for you to continue to be in good health.  Today is good day PRAISE God!

On Mar 23, 2012 4:26 AM Trying2Bcalm wrote:

Is there anyone reading this that has had Stage 4 melanoma that metastasized to the brain?  He has had whole brain radiation and cyber knife.   He was diagnosed in Dec. 2011.  I have read everything I can find out about it on the internet and none of it sounded very good....but when I look at him he looks good and says he feels good.  There have been a few side effects of the radiation that I didn't pick up on....but he seems to be better now that they have him back on steroids.  Just trying to prepare myself for whatever may come.  I am grateful for each good day that he has.  I guess what I'm wanting to know is this - are they any survivors of metastatic stage 4 on this board?  I feel like I'm in the middle of a nightmare riding on a train.  It has taken me all this time to absorb what has happened to him (us).  Now I think it is time to hear all the good - the bad - and the ugly.  I'm trying to keep things normal and we keep very positive thoughts about it all.  People from all over the world have prayed for him, and me and our family - but I feel the need to hear from someone that is going through this or who has survived this.  All I've been told is that if he has a headache, vomiting or nausea that I need to call the doctor.  His next appt is a month away.  Right now I'm feeling helpless - 

I have been reading all the kind messages sent to me - thank all of you so much to take the time to write me.  Just want to give update on my husband.  He is 10 months out from his symptoms that sent him to the doctor.  In the past 6 weeks he has had a PET scan of his chest and pelvis and it came back clear - no spots lit up.  2 weeks ago was his first MRI since May - no new lesions.  HURRAH!  The spots that were cyber knifed are dying off and much smaller.  The only issue he is having is weight loss.  He is 40 lbs lighter than when all this began.  He feels good, works around the house, mowing, taking care of things.  He still takes care of the checkbook and paying all bills.  He walks everyday and is enjoying life.  Doctors told him to eat at least 3000 calories a day - anything he wants....they just want him to gain weight.  He is on no meds...no steroids.  I am so grateful that he has beat the odds of what I first thought was going to happen.....everyone has always said he could fall into a pile of manure and come out smelling like a rose....hahha.  Thru all this we have learned to live one day at a time - and thank God in our prayers every night for that day.  I realize that he is not out of the woods yet...he will always be Stage 4 Metastatic Melanoma, and all that goes with that.  Life changes in the blink of an eye but I can breathe now where I couldn't before - I was so scared.  My thanks to all you dear people for listening to me.  I will do better at updating what is going on here at home...May God wrap his love and strength around all of you and keep you safe and give you peace.

Very inspiring - reading your post has given me great hope about my own husband.

You and your husband will be in my prayers this coming week - hoping that the news is good for you.

On Apr 17, 2012 2:12 PM jandlmommy wrote:

Hi, looking for some answers. My friend has had brain cancer for 9 years now. 3 surgeries, gamma knife and radiation therapy. Unfortunately the Dr's have no idea which kind of tumor it is. She just had her 3rd surgery a month or so ago and things seemed to go well but 2 weeks after surgery and 3 days into her first round of 5 days of oral chemo, they found out she had an infection in the brain. They operated again and now she is on IV Vancomycin antibioitc for 8 weeks. However, she now just sits around and will not talk unless you talk to her, and even then, she is confused and only says a few words. Her husband isn't getting anwsers from the Dr's and of course he's pretty distraught as they have 2 small children that are trying to talk to her but she doesn't say anything. Would anyone have experience wiht this? Is it just because she has an infection or is the cancer getting worse? The Dr did tell her husband that maybe the tumor spread to right side of her brain now, originated on the left. No clue when she gets her next CT scan or MRI. Any info would be appreciated. Prayers to all of you and families who are going through this terrible cancer.

So sorry about your friend - not sure if this info will help but my husband had the 'deer in the headlight' look after he had a brain tumor removed and after he was weaned off steroids...we eventually found out that some of his was caused by new swelling of two other spots.  They cyber knifed those spots and he was put back on steroids...he started eating and talking pretty much normal again. Hopefully this is just a stage in your friends recovery.  Hugs.

So very sorry you have feeling like this - but I totally understand.  My husband went through a bout of not eating - said he wasn't hungry, that he felt full.  Lost 30 lbs.  At an appt with the dr, realized that there was swelling in his brain around 2 spots. They put him back on steroids and his hunger came back.  Have she had any scans lately that would tell you if this is happening to her?  Hugs to you, and you and your mother will be in my prayers.

I'm not sure my reply will help you but here it is - my husband who has been diagnosed with stage 4 metastatic melanoma with brain mets was sent to a dermatologist to be checked over because they could not find the primary cancer.  That dermatologist biopsied some places and found 2 basal cell carcinoma's on his back and shoulder and wanted to immediately do the MOHS procedure.  He had just started whole head brain radiation and I felt he was dealing with enough at that time and told them we would call when done with radiation.  My husband decided to see a dermatologist closer to home after he finished radiation, at that appt. the new dr told him he didn't need MOHS and prescribed a chemo cream....the prescription was $500.00 out of our pocket.  The MOHS would have been covered under our insurance.  I guess my answer is different doctors, different approaches, different goals. I may get flack for saying this....but money has alot to do with things.  MOHS procedure would have been a definite pay for the first doctor. Have you gotten a second opinion??  I questioned things in my mind about him when they wanted my husband to go thru that while getting radiation on his head.  Didn't make much sense to me to make him go thru both at same time.  We might be sorry about our decision one day - but so far we are ok with it.  Best wishes to you - hope all goes well for you.

On Mar 26, 2012 12:56 PM busiwork wrote:

So sorry to hear your distress in your blogg. All I can say is that everyone is different. Treat everyday as a blessing and remember to live each day. Cancer is horrible - we all feel so very lost - its hard to know what to do for the best.

You've got a month until his next appointment - what are you going to do with that month? x

 

I just keep reminding myself that God doesn't give us more than we can bear.....so I'm fighting thru this, spending quality time with family.  Sometimes these days when I look at him, I forget  what he's going thru..he looks so healthy right now. Thank you for your post......'make each day count' is my new motto.  Hugs.  :)