Re: My Introduction to the club and trouble finding help for my son

Makua...Wonderful to hear that your son is responding well to the treatments and that things are looking up.
A tumor board is comprised of a multidisciplinary team of specialists i.e.  Surgery, Medical Oncology, Radiation Oncology, Radiology and Pathology.  Collectively this group will evaluate and design the best course of action for each patient.
Please take care of yourself as well, dear Makua.  Have you seen a doctor? 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Introduction to the club and trouble finding help for my son

Kris, Lainy, and Marion,  well, it seems that things are not going as well as we thought.  Jeff will not be going to Colorado.  Dr. Schulick got back from his trip and thoroughly examined all my son's records and images etc.  He called my DIL and yes, he remembered her and my son and even mentioned the name my son likes to be called.  What a dear man he is.  In any case, he said that he would really love to be able to take care of my son out in Colorado, but that it would not be a quick nor easy thing to do, and that anything he could do out there, we could get done here closer to home.

He had examined all the records thoroughly, and that JH was correct to NOT do a biopsy, and that so far, at this point, everything that was being done was correct.  My DIL asked him if we could bring him out and have him do surgery of some kind which might be helpful, and he said ABSOLUTELY NOT!  NO ONE SHOULD TOUCH IT AT ALL.  No one should try and do any surgery, not even him.  NOW, ONLY CHEMO, NOTHING ELSE.  She and all of us are at least happy to know that we are on the right path.  Yes, he agreed it is very "serious." 
Sooo, even he has no magic bullet. 

His fungal infection is gone, the meds worked, and Robt. Wood Johnson hosp. has put in the port, so it will be ready for the chemo.  they want him to stay a bit longer, and let them administer some additional med, not sure what.  I get my info 2nd  hand remember. 
Dr. Nissenblatt, (who we wanted to have be his doctor here, but who was taking no new patients,) stopped by about 6 a.m yesterday.  he turned on the light and came in and woke my son up, said who he was, but my son was not all that welcoming being still half asleep, so the doctor turned off the light and left. We are all a bit upset at that. We would have hoped that a good conversation and some helpful info could have taken place.  We hope he comes back again.  Our doctor told my DIL that Dr. N wants another scan done, and we are waiting to see if that is because he hasn't seen the other one yet or really does want another.  I would be very happy if he were to become involved in my son's case.  So we are hoping.

Sooo, I still don't know what kind of meds are going to be involved in the chemo. I asked my DIL again to try and find out.  My son just wants to come home, he is  not a compliant patient.  He is one of those people who has never been sick before.  I am hoping that his indomitable personality will be helpful in helping him through this chemo. 

Soooo,  we all were waiting and hoping that he could go to Colorado and something wonderful and miraculous would take place, and that is not going to happen.  We do have confidence in Dr. Schulick, and are very glad to have his opinion, but still we are disappointed.
I am now wondering how much hope we can place in this chemo.  (big sigh)

Re: My Introduction to the club and trouble finding help for my son

My DIL just texted me that my son is being discharged from the hospital.  It seems that nothing is being done there now, that can't be done at home.  Of course he is very happy to be coming home.  I do not know when they intend to begin the chemo, but I would imagine very soon.   At least the sun is shining for him.

Re: My Introduction to the club and trouble finding help for my son

Hello all,
Well, they sent my son home, he was very happy to be discharged last week.
Now today he went back for his blood test and check up.  They say they want to start him on his chemo as soon as this new blood work comes back.

He says that his stomach is bothering him a good deal of the time.  He still vomits occasionally, and has a kind of nauseaus feeling a lot of the time.  I told him about the Marinol, but I guess he doesn't feel bad enough to consider asking for that yet.

I had asked them to please find out what the meds are that they will be giving him for the chemo.  They asked, and they will be giving him Cisplatin and Gemcitabine.   Is anyone familiar with those meds???  I think I have seen those names mentioned here.

I have a doctor's appointment Thursday, and if the doctor says I am not contagious, I will be able to visit him, but I have had these really swollen glands and severe exhaustion for a few weeks.   I think I am improving though.  I just don't want to give him something when he is on chemo, (or every for that matter!)

I think my exhaustion could be the stress.   Soooo,  again, does anyone know about the Cisplatin and Gemcitabine combination??  And how much discomfort does it usually give, (I realize people react differently.)

The oncologist said that it was MILD and shouldn't cause him too much discomfort.  I hope that is true.  It really hurts me to hear that his stomach is bothering him so much of the time.   This disease is just too dreadful, but of course you all know that.

It just seems to me that he is getting worse, and is more uncomfortable, more of the time.   Hard to stay in some kind of denial.

Re: My Introduction to the club and trouble finding help for my son

Dear Makua, I am glad your son will be starting his chemo soon. Gem/Cis seems to be the first chemos of choice then if need be one can move up from there. ANYTHING that is happening that should not be happening like nausea and pain needs to be addressed right away as with CC, actually with most diseases, the longer you wait it can really get out of control. With all the Meds out there today there is no need to suffer. Also when you are fighting pain and nausea you are using up valuable strength inside that you really need to fight the CC. I didn't understand who is in denial but it is not a good place to be. I found that the more open we were the easier it became mentally on all of us. I wish you good luck on the chemo, YEA as it is a step forward.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Introduction to the club and trouble finding help for my son

Lainy,  Thank you for your prompt reply.  As far as the denial is concerned, I have been trying to deny the  possibilities of the situation.   While other members of the family have all felt he was cured after the massiver surgery 2 years ago.  I never felt that way, and always was waiting for the other shoe to drop.  I am  happy for the 2 years he had, but still want him to have more,  of course. I am not as surprised as the others seem to be now. 

I have been reading about the adjuvant chemo after surgery, and of course my son was never able to have that because of all the constant bleeds he kept having after he was discharged from JH after the surgery,   2 helicopters and one ambulance transport down to JH. Two of those times he was out, for about 10 days, unconscious on meds while they did procedures.  It was touch and go, but he eventually made it and was able to come home.  He doesn't remember very much, about that time, since he was sedated for such long periods each time.    However, they said that under the circumstances, his immune system would  never tolerate any chemo, radiation or anything of that sort.  We are just lucky that Dr. Schulick was there to save him during all those emergencies.  Shortly after Jeff finally came home to stay, Dr. S moved to Colorado.

I Have always felt he should have had the chemo after the surgery, (I realize why they couldn't do it)   but I have been reading here and it seems that it does not always prevent a  return of the CC.  So maybe that made no difference.

So here we are now.  He is going to start Chemo, and at the same time, they are going to have to find a place to stay while their home is being elevated after Hurricane Sandy.  People are being force to elevate or sell.   Seems like almost more than they can be expected to endure. 
I blame being unable to live in his home for 6 months after the storm, (so soon  after his surgery!!!) for this return of the CC.  He worked so hard physically trying to do so many repairs himself. (they had 5 or 6 feet of ocean in their home.)  He should have been coming home from work and relaxing, trying to regain his strength and recover from such serious surgery and procedures.

Now again, he will not be able to relax during another stressful medical procedure! 
Sooo, I am praying that these meds don't make him feel too ill, and can hopefully give him more time while feeling better.   I know if it were me, I would be after that Marinol.  I can't stand nausea.

Thank you so much for your support, Lainy.  I think if I could just cry, I would feel better, but altho I am on the verge, no tears come.  I'm not trying to keep it in, it just won't come out.

Re: My Introduction to the club and trouble finding help for my son

Hi Makua. I am familiar with that chemo regimen. I was on it prior to my resection. U did mention that u do realize everyone tolerate these things differently however this regimen is generally well tolerated. My biggest side effect I would say was fatigue and some nausea. But these were mild and I still maintained a pretty normal functioning life with some extra help with my kids and house chores and things like that. I agree with Lainy . Any first symptoms or side effects that start to appear report to doc right away. There are lots of meds to help with some side effects. I was given steroids and anti nausea meds the day of infusion followed by steroids the next 3 days after infusion to reduce feeling just overall icky. Sometimes I used them sometimes I didn't. They can make some people a little more hyped up than normal and I was one of those so I would have a hard time sleeping. But best of luck to your son. Keep us posted. Blessings.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: My Introduction to the club and trouble finding help for my son

What a nightmare you have all been through, Makua. I believe you are much, much stronger than you think. I get through bad stuff by being super strong and then when it is over that's when I let go! The problem is what happens to us by holding it all in. I went through 5 years of being super woman and now am physically paying for it. Don't get me wrong I would do it all again just to be with my Sicilian. It's just not good to not have another outlet. No one ever told me in my life I would be changing drain sites and etc. but the worst part is watching someone you love more than life be so sick. There is nothing worse. We were very open and talked a lot. I mean even to the point he planned his Memorial with me and we had this unbelievable sense of humor going as well. My goal at the end was to be holding Teddy as he took his journey and I did. Know what? I didn't even cry then! I was so tired and numb the tears would not come. So don't worry about that, as your feelings are not measure in tears. If you feel you would like to talk sometime you can email me and I will email you my number. Be strong but take care of yourself also.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Introduction to the club and trouble finding help for my son

Makua, I am sorry to hear of all your sons difficulties, I did take Marinol for two years, it does help with appetite, Drabinol is one of over 100 cannabinoids, compounds unique to the cannabis plant and the only compound known to medicine to affect the human appetite. While your son is in Colorado he may want to try Cheeba Chews, the CBD/ quad dose will get him settled.It is too bad we are so far behind in most states, good luck, Marinol is available in all states, but not as effective as marijuana, Best wishes for your son, Pat

Re: My Introduction to the club and trouble finding help for my son

Thank you all so much.  Porter, I will mention to my DIL to ask for meds to help any side effects.  Glad to hear that it is usually tolerated fairly well, and I hope that he is one of those people.  I'm glad you were able to do many of your normal daily  tasks.  I wish he didn't have to face moving out for his home elevation situation.  That is a lot of exertion that will not be good to do during chemo.
Lainy, thank you so much, I know what you mean about being strong and then paying for it when a problem is over.  I used to be like that when I was younger, but now at 81, I'm not sure I will be able to be that way, but I will try.

Hercules, unfortunately, my son will not be going to Colorado.  The doctor there said there was no point in coming since he couldn't do anything there that could not be done here, closer to home.  I  just watched Weed 2 with Gupta, and oh my, how angry it made me that our state is so far behind in something that could help so many people.  I suppose I should be happy that we can at least get the Marinol.

Now I must get ready to take my little cat companion to the vet. She also, is on palliative care at 15 years old.  She has been my friend for many years, and it is hard to see her failing too.  Everything happens at the same time it seems.

Re: My Introduction to the club and trouble finding help for my son

Makua you have already showed your strength. BTW I will be 74 next month and I know you are being very strong, the hardest part is at any age we are or the children are we hate to see our "kids" go through anything!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Introduction to the club and trouble finding help for my son

Lainy,  Well, I suppose my son is beginning his chemo as I write this.  I certainly hope all goes well for him.

I have a doctor's appointment today to find out why my glands have been so swollen, the size of walnuts for several months now.  We don't want me to infect my son when his immune system is compromised.  I have not been able to visit him so far for that reason.  I have actually been sick since I was given the flu shot back in October. I was fine till then.  I never had it before, but my doctor told me I must get it this year because "I am old!"  We argued and finally I said ok.  I am so sorry I did, 2 days later I was sick and have not been well since.  I had a month or so in December when I was slightly improved, and was hopeful I was getting better, but then when my son got ill again, it all came back big time.  I am hoping it is some kind of personal condition I have, so that I am not infectious and will be able to visit him.  So far my visits have been on the phone.
At least the sun is shining.

Re: My Introduction to the club and trouble finding help for my son

Makua,

I too hope you are not contagious and will be able to visit your son.

I have to agree with you on the flu shot situation.   I seldom get sick, but did get really sick after the one time I got a flu shot.  Absolutely refuse them now no matter what they say. 

Hope the doctor's appointment goes well and he says you can go visit your son without worrying about compromising him.   I too hope that the chemo regime goes well for him.

Take care.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My Introduction to the club and trouble finding help for my son

Darla, Thank you so much.   Nice to hear someone else has had a problem with the flu shot. (I'm sorry for you, of course)   Most people think I'm just imagining it.   While I was in the doctors office, my son texted me that he had just completed his first chemo and that it was OK!!  So I am quite relieved about that, and am hoping that he doesn't feel more uncomfortable as the evening progresses.  I'm not sure how that works, and if the possible side effects are sudden or take a while to impact a person.

My doctor is not happy that I have had the swollen glands for so long, a few months now, and so he has ordered blood tests and a ct scan.  I have a bunch of cats, and so it could be allergies, I've heard that you can develop new allergies over time,  but we will see. I do have a post nasal drip from hell! and that could be I have become allergic to my cats!! Heaven forbid.  Yes, I am one of those old ladies with a bunch of cats.   I made a CT Scan appointment for next week.  He called it lymphadenopathy. and I googled that and it can be all sorts of things.    At this point he doesn't think I am infectious, but we will wait till after my blood test and scan to decide about that.  I'm hoping I will be able to visit my son when all is said and done.  Thank you again for your reply.

Re: My Introduction to the club and trouble finding help for my son

Makua, I am so happy to hear your son did well today and hope it continues.
I also gave up flu shots about 9 years ago. Like you I got sick for months and never had another one. I attribute the fact I do not get colds or flus to Zinc. One a day and if you Google zinc it helps so many things. HA, I just get other things we can't seem to stop.
I am anxious to hear the results from your upcoming Scan, best of luck.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Introduction to the club and trouble finding help for my son

Lainy,  Zinc!  Hmmm,  I have heard that it is good for you. Thanks for the advice.  I will look into it, seems I need all the help I can get.  I do take Ester C, Vit E, and my Stress B vitamins with extra C.  Usually, some extra pantothenic acid helps  a lot when I have swollen glands, but that is in years past.    It did help this time when they were so enormous, it brought them down considerably in size, but didn't get rid of them totally, so I still have a problem, it seems. 

I checked my records and the whole gland problem started after having 4 teeth extracted in mid August.    Went to an ENT doctor for them in September, but he thought it was from the extractions and it would get better.  That is a long time ago now, so I'm glad I'm getting the ct scan.
Wishing you good luck with finding effective help for your "other things."

Re: My Introduction to the club and trouble finding help for my son

Makua. I have heard of swollen glands caused from extractions or tooth infections. Mmmmm
I was taking a lot of Vitamins and was talking to Hospice (when Teddy had them) as well as a dear friend who is a Doctor of research in Milwaukee. Both asked me how my Lab work was and I always said perfect. And they both said then why do you take so much? I am down to Zinc and Vitamin D, that is it. In fact I stopped calcium last Fall and my Calcium is always high. Guess something has to work right! The benefits of Zinc are yea long. Both also said to go off E. I did. I know the Docs love it when we self Doc!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Introduction to the club and trouble finding help for my son

Lainy, Well,  I had the CT scan and also a sonogram, and I have tons of nodules on my thyroid.  I am waiting for the doctor to compare the CT scan and the sonogram and call me with his thoughts.  they did tell me that my blood was good, and I could visit my son, so I visited him yesterday.
Oh my, he has lost so much weight, he has lost half a person!!  His stomach bothers him, and he is still throwing up liquid when he eats,  they are perplexed that the sold food doesn't come up only the liquids.  He has not been eating much, must eat in small amounts at a time.    Seems to me like he is starving to death, but I suppose that is not true.  The doctors suggested a J tube, (I think that is what it is called, but he doesn't want it.)  I can't really blame him.

Today, he drove himself to get hydrated, a 45 min drive all alone.  If I had known I would have driven him, but it was spur of the moment he said, and so I didn't know he was going.  I called, he didn't answer and later he answered and said he was being hydrated at that moment.  I guess we are lucky that he doesn't feel worse than he does, this is his OFF week, he has had chemo for 2 weeks now, will have this off week and then 2 more weeks, and then an OFF week, and so it goes.  He is on a low residue diet, which seems to me to prevent him from eating anything which would really be nutritionally beneficial to him!!

I don't know how his immune system can function when he can't eat the green veggies etc. and othe raw foods that would be nourishing at a time like this.
<big sigh>  He has always been so strong, a force of nature, he is 6 feet 4, and usually weighs about 250.  I did not want to ask him how much weight he had lost.  Hopefully, after being hydrated, he will feel better tomorrow.

I have ordered an IV stand because I have to hydrate my little 14 year old cat who is in beginning kidney failure, and it will be easier than taking her to the vet several times a week now.  I have done that subQ for other cats in the past.  My DIL was wondering if she could do that for my son at home, better than the 45 min, drive, especially when he is feeling poorly.
Has anyone done that at home?? 
Bless you all.

Re: My Introduction to the club and trouble finding help for my son

Makua, you and I are in the same Thyroid club. I have 1 nodule but it is benign and in 3 years has not grown an iota. What I want to know is why nature waits until we are older to start playing tricks on us!
I have my ONC Wed. but I know it is just to set up my next scan in 6 months. 
Then on Thursday I have my Remicade infusion for my Colitis and I don't feel it's working. And on Friday I am getting my 2nd Neuro Surgeon opinion. What did we do in the old days when we didn't have to see so many Docs???
I am so glad you got to see your son. Is he eating at all? Don't worry about the nutrition part as long as he can eat something. With Colitis I cannot eat much fruit, vegetables, grains, pasta and only chicken. Nothing with roughage.
I think you were shocked to see him so much thinner but that all goes along with CC. Take care and please keep us updated and enjoy your visit.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Introduction to the club and trouble finding help for my son

Lainy, well, my son wound up in the ER again.  Extremely dehydrated.  They hydrated him, gave him a GI series again, and he had to wait over 24 hours for a room.  At least he had a bed in the ER.  the GI showed nothing new since 4 weeks ago, but then they did an endoscopy, and that showed that there was significant growth of the tumor into his stent, partially blocking it.  So they put in an additional stent, and hopefully that will enable him to eat without all the vomiting.  We have wondered about the condition of this first stent every since it was put in in JH.  His stomach never seemed right with it.  and lately he had been vomiting much more than usual.  he has been on Chemo for 2 weeks, and this is the first week off, so we thought perhaps it was that, but no, it was the tumor growth.

Now my DIL said that the doctors do NOT want to put the j tube in, and that they want him to continue trying to eat real food.  Now I am thinking she was the one who wanted it, because I know my son did not.
Anyway, he is home again, and I will try to go see him tomorrow.

I was just told that a 3rd little cat is hyperthyroid, and so I am struggling to give her her med, and she is very difficult.  The other two are easier to give the med to.  And of course the 4th cat is only palliative.  My IV stand arrived and is defective, so must be sent back and I must wait for another, so I took her to the vet again.  I should try to do it again myself, but frankly, I am so tired out, and so depressed by everything I don't really feel like trying.

I am glad to hear that your nodule is behaving itself, that's great. My doctor wants me to see an endocrinologist after seeing my sonogram, and I have an appointment Tuesday.  I am totally exhausted most of the time, and I am wondering if it is all stress and depression or if there is something the ENDO dr will be able to give me.  If so, that would be great.
Yes, as we get older, so many things start to go wrong, the golden years are not really golden.
Is your neurosurgeon visit for the colitis, I didn't think that required a neurosurgeon?
Yes, it did seem better years ago when one doctor actually CAME TO YOUR HOUSE and took care of you.  House visits have been a thing of the past for many, many years now.

Re: My Introduction to the club and trouble finding help for my son

Makua, you can't look back on what was or what could have been. JH is very experienced with CC and perhaps your son had to go through what he did to now be able to move forward. I can tell you that starving almost to death is horrific as I did that a year ago and it was extremely scary. That was from the Ulcerative Colitis and I never want to go through that again. They were ready to put in a J tube and gave me one more day to try and eat. By the Grace of God and with Teddy's help, I am sure, I awoke at 2AM and was so hungry for the first time in a month. I gobbled up 12 crackers with peanut butter, which I don't even like. I avoided the J tube. It is something the DOCs don't do lightly so I don't think your DIL could have a say in it. I wouldn't want her job as Caretaker again, it is the hardest job in the world.
The Neuro Surgeon is for a tumor they found in January on the left side of my brain. I will be having another CT Scan with contrast as they did not do the CT with contrast the first time! The Scan could not really be read, he showed it to me. So, yes, I am doing that, colitis and Diabetes. Lovely, IKnow what? WHen my golden starts tarnishing I just take out my little polishing rag and make it gleam again! BTW stress is the worst thing for any condition. I know, as Moms no matter how old our kids get we don't want to see them sick or hurt. Please do ask the Endo about something light to help the stress.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Introduction to the club and trouble finding help for my son

Oh my Lainy, you certainly do have your plate full.  I am so glad you were able to eat again.  You are evidently a very brave lady, and indomitable too! I hope your next scan is better for you.

My doctor gave me xanax 2 years ago when my son first went into JH, so I have that, and every week or so, I take 1/2 pill (instead of a whole one) just to take the edge off, but I am beginning to think I should just go ahead and take the whole pill as I was prescribed.  I find myself becoming very irritable in addition to being exhausted, so I guess I should do that.

It was very warm here today, I hope you had good weather too. Bless you, and have a good evening.

Re: My Introduction to the club and trouble finding help for my son

Makua, I am so glad it is finally warming up for you. This whole last week was in the 90's. We love it but it gets boing with sun every day. We need some big clouds and RAIN. I take 10mg of Lexapro. Very mild but does the trick. Only thing is I can't cry now. I watched an old movie with Mickey Rooney called Human Comedy and I wanted to cry so bad at the end and could not. My husband and I had our own saying when ever something went bad physically, "Now we know what's wrong, let's fix it!" I still live by that. But the Lexapro does make me laugh at things I probably should not. Awaiting the next update on your son. Be strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Introduction to the club and trouble finding help for my son

Prayers are with your whole family.  Hey, I ordered extra bracelets...can I send you some?  Just need your mailing address.

Take care and best of luck.

Re: My Introduction to the club and trouble finding help for my son

Makua,
Just wanted to introduce ourselves.  We are going through similar situation and are within a few towns away from you.  My brother is 57 and only had symptoms in October, November.  He is receiving radiation and chemo at University of Penn.  Daily. Remember to also take care of yourself.

Labrador family