jeffg
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Katia… My answer to all three question is a no. What more can you tell us about Escozul? Thanks!
Jeff G.cksvelasco wrote:Dear Jeff,Great news about your scan!!!!!! It’s so inspiring to hear your story and how brave you are. Just had a few questions that I wanted to ask you if that’s OK. In the time you have been fighting this disease did you try radiotherapy and did you ever combine Davanat with any of the chemo treatments? Also, have you heard of Escozul, blue scorpion venom in Cuba being used to treat cancer?
Dear Jules,
What does the treatment that your dad started to have consist of? What is it called?
Hope this message finds you both Ok.
Best regards.
Katia
Hi Chris…. If that is all they are seeing you could also ask about cyberknife radiation. this is known to be very precise and effective for small tumors. They use it on brain tumors quite frequently. Sure is no harm in asking. They would have used on me but my tumors had become to large. I went with 3-D conformal radiation instead and the areas treated responded very well no growth increase to date. One treatment was directly to the liver its self. 3-4 weeks for about 5 minutes a day excluding weekends worked for me.
God Bless,
Jeff G.Laura…. I viewed your link and wanted to say it appears you have found yourself and Tommy an excellent surgeon with great credentials. Hope and prayers headed your way for another miracle.
Jeff G.
CDR…. I would like to just echo the layman’s deduction Peter gave to you. I have also watched my CA19-9 go up and down before and after treatments. It has been a very good indicator of how my cancer is progressing or if it is regressing or slowing down a little. I also rely on CT Scans every 2-3 months and any change in pain location, I will advocate for a MRI or Nuclear Bone Scan to confirm or rule out any mets/tumors growing else where.
Laura…. I’m not sure what a CA10-0 test would indicate. Sorry, but I’ll do some research though.
Jeff G.Hi Caroline, I haven’t been posting on the site lately but just wanted to pipe in and say Your one bundle of inspiration ! I’ve been reading your Family Blog from the begining and just admire your gusto! You are certainly showing how persistence and never giving up hope, (positive thinking) can benefit those of us fighting this no longer rare disease. I’m happy that FOLFOX is holding all stable at present. I am holding stable at present as well. Will have follow-up scans and etc. in two months. Only taking my evening concoction of herbs and spices about an hour before bedtime and the least amount of pain meds possible. I was out teaching my grandson how to ride his bike the last couple of days. Hurray! and thank God he took off riding without me trying to run along side on evning two. It made me so happy to see how proud his face and demeanor glistened. It may have tuckered me out but it was definitely worth it. Caroline, I wish you the best and look forward to reading your blogs of motivation.
God Bless,
Jeff G.Kris, I asked my new oncologist about your DX and how long you should wait. He said if no recurrence within two years is what he would recommend to any of his patients. I hope you have found an answer to your other question or in the progress.
Jeff G.Mary, It’s Monday and I’m thinking about you and your Hubby. I hope the stent replacement goes okay and and he is feeling well soon.
God Bless,
Jeff G.Kris, I agree with Peter about getting things checked out. In most cases it means a lack of bile flow. But it can also be other things related to diet. You probally could go to your regular doctor and provide stool sample and see what results, but given your past history if it continues more than a few days then press on with the specialist. Have you made any major diet changes since yoour resection especially anything with food coloring or food high in minerals such as aluminum? Or possibally taking any health supplements?
Jeff G.Hi Kris, I will be seeing the Oncologist Wednesday and would be more than happy to ask the Doctor. Also I’ll get opinions from two top notch Oncology nurses. Between the two of them they have at least 40 years of experience.
Jeff G.Charlene, I’m sorry to hear all the run-a round you had and I can see why you should be somewhat distrustful of the doctors judgement. I have had chemo for over three years. Yes it can help slow growth and reduce size, but and I say but sometimes that don’t work for some people. It is a very selective and individual results for people. For a doctor to simply say it would not help at all is way out there. Also I have had radiation on three different tumors and it reduced and stopped the growth of those particular tumors and relieved me of considerable pain. 3-D conformal radiation was use each time. Radiation is highly effective in fighting tumors/cancer. The only problem with cc is it is considered systemic and can mets/pop-up anywhere. If you can get radiation to them whether internally or externally in my opinion you will benefit as long as it does not interfere with any major arteries/ blood supply/flow that would affect the heart or brain. Chemo can help the systemic part to what extent who knows? But to much chemo will have a cumulative effect of your viens and arteies like scaring and hardening. I think it is called something like thrombosis. So you need to make a personal choice on how long to do chemo as a few oncologist will keep pumping it to you as long as your still walking. It’s the cumulative that sneaks up on you. Other alternatives can help the mind and body as well in my opinion. Boils down to individual choices that are not by any means easy to make. Charlene, I’m glad you have change oncologist and I pray that John fights this thing for a long time. Oh! Charlene, John hit the nail on the head when said your love is the best medicine he can get.
God Bless,
Jeff G.Carol, Good to hear the news of a proactive surgeon. I surely hope all goes well with emobolization and resection. I really believe removing what can be removed safely is benficial, although this cancer is considered systemic if you stay on top of it and attack it where ever it arises I personally feel your ahead of the battle. It’s so important to do the 3 month Scans or when ever you feel pain else where so it can be dealt with appropriately. In my case twice this past year it mets. So some 3-D conformal radiation put things to rest both times. Keep that positive attitude Rolling.
God Bless your whole family!
Jeff G.Lew
I have relatives in Arizona. You actually have a Mayo cancer Center located in Scotsdale. Address is 13400 Shea Boulevard. Contact Number 480-301-8000 is for main information. You would need to contact Mayo and make sure they are accepting new patients. Normally that is not a problem for oncology. When I transfered to Kansas the only problem I had was finding a primary care doctor that participated in my meidcal insurance program that was accepting new patients. You can do a release of information form where your at before you leave and take records with you or have them sent to new oncologist and primary care Doctor. I requested and got a summary referral letter ogf my DX, past treatments, and current status. Good luck with the move. I moved from the east coast (Maine) about 6 years ago.Watch Out For The Other Guy! (Safe Driving or flying)
Jeff G.ara81— Yes I read up on all the side effects and then I have the prescrptions for each filled and in the medicine cabinet. This is where advocating for your self comes in to play. Some Doctors prefer to wait before prescribing particular side effect meds. At the first little sign or hint that nausea or loose stool or pain, I take before it happens as the side effects and pain will cause not wanting to eat and in turn loose weight. I also take colace stool softener a couple capsules every other day when I have had the need for a few extra pain pills as I know it will make the bowels sluggish again giving that full feeling and not wanting to eat. My Dad always had this saying when someone wasn’t feeling that great “that it is all in your head”. Well to some extent I have to agree as I have taken clonazepam 2mg tablet at least once a day at bedtime and maybe 1 tablet during the day since day one, primarily for anxiety and proper rest/sleep. I just feel those cells dividing and mutiplying to fast need to recieve some type of message from the brain at some point, so slowing down my brain signals a little bit maybe helps slow progression. I could be out in left field on this but if it works for me so be it. I mean if the world of professionals are still trying to figure everything out , my harmless idea that it helps me, why not. I surely hope your Mom is feeling better now it’s so blah to feel ucky all the time.
God bless you Both,
Jeff G.Hi Colleen and Fred, This disease just won’t leave people alone. I’m sorry that you have to go through what so many are,including myself. It’s a tuff pill to swallow and a hard battle to fight. However, there is hope!!!! I’m telling you right now that it may not be pleasant at times and Fred you’ll want to throw in the towel— but that’s when you want to kick in the overdrive! I have been dealing with this disease for over 8 and 1/2 years. Unfortunately many lost the battle but on the same note I’ve seen others go on for years. Stay positive, always look for something new, advocate for yourself when needed. Even change direction if your body tells you to. Yes you heard me right. Get to know your body and symtoms and listen to what it is telling you. Relax, meditate, Visualize those cancerous cells leaving your body like they were on fire. Be prepared for all the side effects and have appropriate meds on hand to combat the side effects. Don’t wait; if you feel something is different and not right get it checked out. I’m saying this because I’ve been doing it and will continue to do so until I stop this critter or a cure is found. Sounds Like I have an attitude hey? I get carried away at times. Especially when little children are involved. Bottom line Fred, is you got to keep that positive switch turned on and pray for a cure around the corner or a treatment that works for you. Got to get the grandchildren ready for bed. They are awaiting for their bedtime snack and milk. I sincerely hope your treatment keeps on working and if they stop try something else. Sometimes you have to play hide and sneek—-up on them with something new.
God Bless You All,Jeff G.
