jeffg
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Jane, You have a caring and loving heart. It’s sad when your feelings and desires are being torn apart. I’m sure you will support your sister in the best possible way there is. Just a call or a letter expressing your love, care and support will be a good start. Sometimes distance keeps us apart from those we love and want to help through rough times. That has happened to me once and I’m afraid it will happen again. Many times I wish I could have been somewhere else but unfortunately the reality of responsibilities prevent that from happening at times. I’m sure your sister full of wisdom understands. After all she is your big sister. She knows your situation and responsibilities. Lets roll on the positive side with the good news and believe in hope and keep teaching your little girl Lara some new prayers. A prayer headed your sister’s way.
God Bless,
Jeff G.CandyZ… Any chills, fevers, or incisional swelling. Also, any uncomfortable feeling of belly extension. Basically keeping an eye open for any post surgical infection that happens often internally. Don’t hesitate for a moment to head for a ER if chills or fever. Glad to hear surgery was completed and he is already walking.
God Bless,
Jeff G.Patti…. The bottom line in my opinion is you need a GI surgeons opinion on wheter your tumors are resectable. Resection is always the best possible route to take for the best long term prognosis. Wish you the best as you continue to rattle cages.
Jeff G.Alice… If you or the doctors did not notice the tumor on the head of John’s pancreas then you certainly should not be told all is stable. I would at the first chance you get be talking with doctor or comparing ct scans. A 5.6 CM mass on the head of the pancreas is not something to be taken lightly. Determination of wheter it is resectable or not is what I would be asking about. I don’t mean to be so blunt but if that tumor /mass was not there previously then maybe a second look and different approach of treatment is needed sooner than later.
God Bless,
Jeff G.Tony- Please read the post from me above. Although we are individuals who have individual results from different type treatments, radiation and chemo is at this point and time pallative treatment with better responses for some and not so good for others. Personally for myself I have been able to manage and extend my life using both radiation and different chemos. Your oncologist needs to think outside of the box and monitor chemo effectiveness and try different chemos if one appears not to be working. This is better than sticking to straight up protocol of 8-9 treatments when they can usually tell within 4 treatments or sooner if it is working for you. Radiation is being used all over the world for this type cancer. It depends on how advance ,size, and most important location of tumor. There are many types of radiation procedures depending on your situation. One thing to remember, it’s not across the board the same results for everyone. And as we keep saying get 2nd and 3rd opinions if possible as different doctors, surgeons included will try something that other doctors won’t. It boils down to getting yourself fully knowledgeable of this disease and self advocate. Some supplements people say have been helpful. Then again some so they have had no luck. Milk thistle for healthy liver help is about all I am using at the moment. I basically eat what I want but stay away from fatty and greasy food stuff. Personally I think a loaded pizza is one of the most healthiest meals out there. Home made ones with low fat cheese and noe greased up pans. Prayers coming your way Tony! Keep that positive attitude and be a survivor! Take some extra time and click on the links of this site and I’m sure you will become very informed before the day is over. God Bless,
Jeff G.Hi Kel, Sounds as though you have been a busy little fighter this past year. I think your Oncologist is right on with giving your body a break. That’s exactly what I am doing now. The chemo takes quite a toll on the bone marrow (white and red blood cells). Did your surgeon consider maybe cyberknife. It is a pretty precise radiation. I mention only cause I had 3-D conformal radiation last year directly to the tumor of the liver and it was 6x8CM’s. They did it as a pallative measure to stop pain and it stopped the tumor from growing. Although I have had some other mets going on. I would ask if it’s possible to have a complete MRI of pelvis, abdomen, and chest. That is when I discovered where my mets were. I had that done because of pain in my side and found a soft tissue tumor pressing against my spinal roots and mets to my ribs. 3-D conformal radiation again put a stop to it. Kel, I believe in the power of the mind and positive energy as but is it a match for this disease? I still remain positive and and full of hope. The hope will remain until it is taken as far as I’m concerned. There is other Chemos that can be tried. Taxotere is what I’m doing at a reduced dosage. It is also know as docataxel (sp). I would not go full dosage as it is a cell eater for sure. I have to take antibiotics and Filgrastim shots days 6-11 for each treatment on reduced dosage. First treatment was full dose and put me in nutrophenic state in 3 days. So glad they caught your lympedema quickly but I’m sorry this battle has cuased developement od diabeties. Kel, don’t beat your self up. Your not selfish or a bad person. Love your self and continue making the best and most positive decisions you can. You have a right to be angry at the disease. It’s not fair for any of us to have to go through this crap. I really wish you the best Kel! Your right about surrounding yourself with positive energy but sharing your experience at a group could very well boost that energy as well as give you a chance to pop your pressure relief vavle and vent alittle bit; your carrying a heavy load and dumping a little of it would do you a world of good in my opinion. Okay I think we a competing on who is longer winded. Ha! Your quite welcomed and Thank You for sharing this post. We are all in it for the duration good ,bad, or indifferent. Although we did not ask to be we can only do our best and keep that positive energy zapping.
God Bless,
Jeff G.Celoi,
I can only agree with what Joni and Carol wrote. I think everyone who read your posts on a regular basis and like you said,( shared the journey) can feel your pain. Celoi Your not alone, God will live in your heart and give you the strenght if you let him.
God Bless,
Jeff G.Hi Matt and Valerie,
Glad to hear tumor is a little smaller. Hope you continued to see success with shrinkage. Just a thought to think about; if for some reason the shrinkage stops or doesn’t remain stable, I would be asking Oncologist about alternative chemo instead of going the full 8-9 treatments. I found it saves wear and tear on the bone marrow in the long run. Wish you guys the best.
Jeff G.Hi Patti-I agree 110% with the Commander. My CC is of unkown primary and always will be. I had Oncologist actually verbally slamming each other over where it originated. It really hasn’t matter to me. I still went the routine of half of liver removed and gallbladder. Then monitor with Ct scans.
If I had to do it again I would have a round of chemo after and that would be it. You need a surgical opinion on if the liver tumor is resectable with clean margins and get rid of that troublesome gallbladder at the same time. That’s just my opinion. Have you been told if the tumors are on one lobe or both? Patti, it’s so awfully confusing at times I know. The bottom line is if it is DX as intra CC it is considered systemic (in your blood) eventually chemo may be the choice to keep it under control but long term chemo will eventually wear out your bone marrow and weaken your on immune system so you have to draw the line at some point with chemo as well. You may have to start and stop chemo giving your body time to recoupe. Patti, March 16th will be nine years fighting this miserable disease. Yesterday I saw my oncologist and my blood counts, BP, and about everything else was within normal range. The oncology Nurse commented in amazment this was the best I’ve seen your vitals in 3 years. I just told her it was amazing how the power of the human mind and balance of energy can do for ya. Listen to the Commander Patti, and get a second or third opinion, oncology and surgically. Positive state of mind and self advocation as scary as it may be, is the way to go. 1. resection if possible (more than one opinion)2. Chemo if you want and then only if it is working. If not working try another type of chemo 3. Radiation There are different types (some real high tech procedures available). You also mention you were having some pain in your side– Don’t hesitate to ask for MRI of pelvis,abdomen, and chest. Listen to your body. I hope this was not to blunt patti, but the point is take the bull by the horns and you can manage this disease for a long time in my opinion. Again this is just my opinion, we all have them. After saying that, it also depends on when it is found, where it is found, how advanced and wheter it is low grade or high grade which determines how rapidly it progresses. the pathologists can determine that by how active the biopsy sample is. We all have different DNA and unfortunately different outcomes. At least remember the Lord helps those who help themsevles I believe anyway. Don’t forget to maybe consider meditation/visualization/and other techniques that you can be doing while all else is going on. CC is still uncharted waters and changing course as your body and minds feels may be needed. Sorry for rambling, Just want you to know this disease can be manageable to a larger degree than some might think. I wish ,hope, and pray that you get the answers your looking for and have positive outcomes. I don’t want to sugar coat nothing, you will experience and I think you already have with chemo a bumpy road. Some more than others.
God Bless,
Jeff G.Lisa- Wishes and prayers for the best outcome possible. You’ll do just fine. Will certainly be thinking of you.
God Bless,
Jeff G.Family of Patricia Martin- My sincere condolences. May Patricia rest in peace.
I’m glad she was able to see the beauty of heaven as her soul departed this world.
God Bless to the whole Family,
Jeff G.Dear Mickyma- Sorry to hear about your Mom’s condition. I guess you can call me an ole- timer when it comes to chemotherapy. I started on Gemcitibine about 3 years ago and have tried many others since then. Initial treatment with gemcitibine for me was not bad at all. It also got an initial response of about 50% reduction in tumor size but only remained effective for me for a period of about 4 months. Chemo has different side effects which individuals can experience or experience hardly anything at all. It is always given with pre-meds to lesson side effects but they should also give prescriptions to take home for nausea and something in case of loose bowel movements. Drink plenty of water and eat even if you don’t feel like it, to keep your nutrients up. Dehydration and malnutrition play a major part while doing chemo. You have to eat and drink. If it means taking more nausea meds to do that, so be it. Many many times I would take nausea meds to keep my diet rolling. I guess one thing I would consider and ask for is to have a port-a-cath put in if possible. Its outpatient half day surgery. and it will save your mom from having a lot of poking and prodding to have IV’s started for every treatment. Again that is one of those choices. I personally started without one then quickly got it done. Some people get the stigma once one is put in that’s the end of the road. Well, to the contrary I’m still around and it’s been in for over 3 years and still working fine. In fact I’m headed for Hawaii in a couple weeks for a vacation. I have also had radiation called 3-D conformal external to the liver and some other areas. In my case it was decided to be done as pallitive measures to relieve pain other wise my Onco said they try to avoid radiating the liver. However if you do a search on this site you will see other radiation methods have been accomplished with positive results. I sincerely hope your Mom maintains a positive attitude as I feel it is the number one weapon in fighting this disease. When your done and feeling like why bother, is the time to kick it in to high gear! I wish you and your Mom the very best outcome possible.
God Bless,
Jeff G.Dear Matt and Valerie- It is great to hear that Valeri’s tumor is smaller. And I’m glad to see that you are active in raising funds for cancer research. However, as cruel as it might sound I do feel it is inappropriate to use another foundation’s website by attaching a link to highway of hope to solicit donations for individual donations or any donations. This site supports it’s members in many ways and has it’s own donation program for research for the benefit of all touched by this disease. The Cholangiocarcinoma Foundation has it’s own vision,mission,and values. I know other members have some concerns about you posting this link on this site requesting individual donations. I personally would love to see you as members of the cholangiocarcinoma organization but would prefer that the link not be part of your posts as this just isn’t what this site is all about. Most if not all on this site have dealt with with the financial burden created by this terrible disease. Some members even have trouble with their Insurance Companies approving coverage for certain treatments to extend their lives. So again, I personally would love to see you as part of our family but please drop the link, as we all are aware of the expense involved with fighting this disease. I do pray and wish you both the only the best.
God Bless,
Jeff G.Patrice and Dave – Glad to see you back at home and feeling much better. That would be nice to hear if they can get their hands on that new drug. Sounds so promising. I would love to hear someone say Bingo!
God Bless to You Both!
Jeff G.HeatherKP- It is a fightable disease! I’m on your team. Many decisions ahead. A few things to consider: particular supplements, EFT, Silva Mind system, staying active but not over due it, 2nd and 3rd opinions if felt needed, positive thinking, not to big of a diet change but some, depending on treatment and if, I say again if it becomes to debilating don’t hesitate to apply for SSDI while fighting and reduce as much stress as possible in your lives. Dealing with CC is plenty on it’s own. Last but not least Prayer, belief, and hope for the cure to be around the corner. Until then take control and manage and listen to your body it’ll tell you if something is working or not. Precribed meds take before symtoms. Don’t be afraid to adjust meds a little to keep your body in tune. example if you get to a point where pain meds are needed on a continual basis, use stool softener trial and error amounts to keep regular bowel movements. I think I better stop now. I could rambler for an hour or so. Sorry you had to join the site. But we are all certainly here to provide as much advice, opinions and share experiences as we can. I know I threw a bunch at you guys and hope you don’t panic but being kowledgable and proactive makes a big difference. March 16th will be nine years of many battles for me but the war still continues for me. Yes it has taking quite a toll on my body but I just have this attitude problem with CC Ha! Wish you guys the best!
God Bless You Both,
Jeff G.
