Do not let it steal everything. We still have choices so lets all take a wonderful attitude and celebrate LIFE. One must keep moving forward. . . . as Leiomyosarcoma is a thief otherwise. one must take back what belongs to them which is this day we are also all thrivers.
“S0 Keep on keeping on with Life and LMS,” we are allowed to always be on our game.
That’s the forgive part. That is the good and bad in a way. It definitely makes me know never to put down the sword and shield. We must investigate and know for ourselves… There are studies about curcumin and Leiomyosarcoma 2000 mg daily is what it takes.
I wanted to pass onto you a bit of information shared with me…. by my thoracic surgeon who does quite a bit of sarcoma cases. He said the protocols for chest CT scans are being moved to non contrast–and abdominal and pelvic scans should be MRI with the goal to do low dose radiation.
I’m typing on my iPad so I hope this is clear. I am interested in hearing what others have been told. I love that he is interested in sarcoma and wish we could get him as a speaker at our retreat. His specialty is very narrow and specific to lung nodules… He wants to perfect this skill to help people like us and his name is Dr. Shawn Tittle … Excellent surgeon.
Dr. Tittle is located in Connecticut. He practices in Norwalk and Danbury Hospital and he knows everyone well from Dana Farber. My Sarcoma specialist is Suzanne George. My surgeon is Shawn Tittle. I can’t promise he can perform what Dr. Rusch did at Sloan. I am 8 weeks post VATs and I could not walk 1 mile the day after surgery. The chest tube gave me spasms. The PET/CT scan is utterly useless for Sarcoma. Very unreliable and not worth the radiation. Heading in August 24th for another VAT procedure 1 1/2 years after my last one. Offered an EBUS. EBUS is a endobronchial ultrasound biopsy. No No No! Always take it out in one piece folks. You have to advocate for yourself. At least I have an excellent surgeon. I did walk the hallways at the hospital… by week 1 could walk around my culdesac a few times. IT’S IMPORTANT TO FIND A GREAT SARCOMA CENTER.
What do you mean that PET & CT are useless for sarcomas? So if they show NED they really aren’t? What do you recommend for uterine LMS?
Not a PET & CT. A PET/CT is a combined scan. Most people just call it a PET scan. But, most are now PET/CT combined. Sarcoma’s do not always light up, and mostly they don’t light up, so it’s not a reliable indicator. And, there is more radiation with a PET/CT so I do not think they are worth the cost in terms of radiation or insurance. Better to get interval changes using a CT scan for the lung. And, always go for taking things out in one piece. No biopsy or morcellating. EBUS is a No No! It would mess with a cancer that seeds.
The CT scan picked up A para tracheal lymph.. Nothing lit up on PET/CT.. Two months later significant interval change.. My first lung met lit a little and was smaller than this. My sarcoma surgeon said PET/CT are unreliable. If I stayed with the thought that this PET was reliable I may have lost time getting it out.
I am interested in knowing what seeds, nuts, fruits and veggies many of you eat. And, what do you avoid altogether.
I heard that lavender was a BIG if you tested ER/PR positive it stimulates estrogen. Take your Zinc it offsets cooper. Please share any bits of information you may have. I know that all information shared is purely a matter of opinion and not prescriptive.
Let food be thy medicine:
I eat all kinds of berries, beans, almonds and apples, oranges, bananas, apples, pineapple. cook stews with lots of veggies except corn… kale, spinach, parsnip, yellow potatoes, yuca, carrots. eat steamed broccoli and artichokes. eat chicken, fish or turkey, brown not white rice and don’t eat peanuts or cashews. I am an advocate of putting nothing totally “off-limits” except the more processed it is, the more likely I am to avoid it. The more “Paleo” it is, the more likely I am to eat it more often. I know that I should eat better. I have cut down on the junk. and I used to drink a lot of diet coke, but figure that now my body has enough other chemicals to deal with don’t blow it eating chips and chocolate!
Isn’t it interesting that experts don’t know much about cancer, and continue to pour billions into known harmful chemicals, and yet balk at natural substances stating there is no science behind them . . . I believe at some point there will be strong evidence that boosting the immune system will help with some cancers, and hopefully prevention.
I don’t think any of us should just take “there’s no to science to prove it” as an adequate answer.. start researching it so there is science behind it then. The USA is so caught up in greed and red tape it’s not funny when you have cancer and leaves you to second guessing.
Just look at Yolondis as an example…70 other countries have approved it …. as a first line chemotherapy, but we are still caught up in trials??? It did wonders for me…I’m one of the lucky ones that got to use it in a trail…I need no further proof that it has a place in cancer treatment! Greed!!!!
I say this a lot…having been doing this for over 12 years…I have seen everything and done every crazy diet.. Annie who was an integrative doctor in San Francisco almost did everything ….still got LMS and passed away. I do feel better when I remove certain foods from my diet however I doubt it cures anything. I know there is Kris Carr running around doing the alkaline thing and making millions…. it might work for her and the make up of her body….but it wont work for the majority of patients…or else everyone would be doing it! I do not believe either that you should poison yourself with tons of sugar….coke ….and processed foods.
I do believe eating as healthy as possible helps you. I also think having a few extra pounds on your body helps as well. Being too skinny is not a good thing. Just my personal opinion. I think they should investigate vitamin B -17 (laetrile). However, the FDA still has banned it, yet many people in Mexico and world wide use it…it might not be a cure, but stabilizes, or helps prevent certain cancer, then why not use it…it isn’t illegal to buy and use, doctors are just banned from administering it.
My friend Mike was given 6 months to live after he did many radiations, many chemo’s, and many surgeries….he turned to all natural food and used B-17 along with a pancreatic enzyme so the B-17 could absorb in the body…he lived for three more years, and all except the last month were very productive and pain free… I’ve taken quercetin for many years for reducing inflammation in joints. Take pill with bromelain included it helps.
I do believe there are things out there in nature.. heck, Yolondis came from sea squid, they learned to make it synthetic and now it’s used in many counties…. I don’t want to come across as a crazy anti FDA type, but seriously, if they would loosen their grip and allow researchers to work more quickly, we’d be closer to a solution…just look how they lifted stuff for HIV, and boom, we have a good solution for people to live long.
I have been on Letrozole for a year. Hot flashes are gone but I now take heavy doses of vitamin D and calcium to hopefully ward off bone damage. I get stiff joints. Mild exercise helps that. Worse for me is the trigger fingers on both hands and they get very stiff. I ice them down three times a day. I was on Letrozole for over a year and a half before the side effects hit me before taking 2000mg of vitamin D3 daily. While Severe pain in joints and muscles, and it made me feeel like an old woman.
While others do Arimindex — for 2 1/2 years, not Letrozole. And they experience hot flashesand sleep under a ceiling fan. While some have take an estrogen blocker called Faslodex to combat hot flashes, other take 1500 mg of Neurontin (gabapentin) & 1200 mg of vitamin E. With stiff joints and exercise seems to help. I also have known them to get trigger finger that’s goes away. While bone loss is a concern, some take Fosamax help. I will say be gentle with yourself. I went sledding and hit the bottom of the hill REALLY hard and fractured my spine.
No one has said the AI was to blame, however, hindsight being 20/20 I might not have gone down that snow hill. All in all I am very happy on AI! Aromatase inhibitor. I don’t know what level of progesterone and estrogen are required for this medication to be effective. Definitely speak to your sarcoma specialist or oncologist about this?
It’s amazing what can be accomplished when researchers can work together instead of competing against each other, or writing off something because of peer review. There is no “evidence” chemo doesn’t kill because we all know it does… They Can’t get evidence without doing a trial, and so many want to keep using chemo, even though the statistic for it are horrible at best there are some shining stars, but for the majority it office little more than a year or less of stability…quite a high price to pay..
I know I’m preaching to the choir, sorry…I’m done now… I promise. Please watch this video from Dr. William Li. where he explains what anti angiogenesis is and how some foods we consume have this property.
I take Healthy Items Curcumin & can-help, hot water w/lemon juice & cayenne pepper & drink a green smoothie w/alternative ingredients each day. I take vitamins that boost the immune system as well as others. I try to eat mostly organic. Not much dairy. Love veggies, nuts, salads. Sadly I have a sweet tooth – I’ll try to control after the holidays. Oh, I try to drink lots of water. Here is the full list of foods: http://www.eattobeat.org/foodlist
Yes, avoid soy. . . . Or make sure it says organic Non GMO and all GMO foods as much as possible. There is an app for GMO’s as well as an app called The Dirty Dozen….very handy when shopping. I make a smoothie using amazing grass and PB2 with a tablespoon of chia seeds (Because Omega’3s help prevent the spread 0f cancer and almond milk.) Many times I will add frozen organic berries. It makes a great smoothie. It is difficult in todays world to eat healthy, but I keep trying and hopefully it will pay off. I had gone low carb a year ago in Jan and was eating very healthy and got this damn LMS. Go figure!
I green drink every day. Kale… power greens, carrots, celery, beets. I change it around often through the week. I always throw organic frozen fruit in there. Change that around too. I read somewhere you need to do that. Hemp seeds go in. Vitamix does the pureeing and down the hatch every day. Thanks for sharing the food info. I try to do this daily but I still had a metastasis after seven years.
I believe stress did me in. Worst thing ever.
So, another stink bomb appeared 1 1/2 years after my last stink bomb in the right lung. This time in the paratracheal lymph node which is very close to all those major cardiac blood vessels. PET Scan was useless, no metabolic activity and falsely indicated with no abnormality. MY Surgeon said Sarcoma’s are notorious for has false PETs. Second time PET scan lied. No more PETs for me.
Initial tumor in 2006 was <10% ER receptors but they are retesting again. So, waiting for that. Recovering from the VATs then moving forward again. My treatment team consults with Suzanne George, however, now they want me to also see Robert Maki. They are overly protective and I love it. I have extremely competent providers.
July is my 9th year with this stink bomb. Enjoyed 7 years NED before it stunk things up again. I’m hoping for another long stretch because this emotional roller coaster stinks.
Any suggestions for de-stressing? I continue to work full-time. I need the mental stimulation. Another de-stressing idea–learn to play a new musical instrument. I have played the piano since I was a kid 3 years after the LMS diagnosis, I began harp lessons. If you can read music, it’s not that hard to pick up a new instrument and the harp sounds beautiful even when a beginner like me plays. It’s a gorgeous art piece too if you keep it in the living room, as I do.
I decided to try something completely out of my skill set. I have had collie dogs all my life. I ran for national office…I was formally elected to the Board of Directors of the Collie Club of America. We are the Club of Lassie and meetings… always mean lots of dogs and puppy kisses. Collies also get Sarcoma & the Collie Health Foundation funds substantial Sarcoma research. Many people give lots of money to fund health research on collie dogs. I was at a collie event in New Jersey 2 weeks ago — a gentleman asked if he could donate $870,000 to the Collie Health Foundation!!! Results from dog Sarcoma research are often applied to humans. So for me doing something completely different has been de-stressing. Some of the best research is coming from the dogs who get sarcoma.
At the height of my need to de-stress while working FT: fun reading….when immersed in a book my brain goes with the story–like a mental vacation; found the same easy listening meditative music that I listened to everyday and while I sleep…it also triggered me to calm down and relax; yoga was huge…probably does not fit as well into your schedule and if you are hurting.
However, the sheer act of concentrating on my physical self made the mental self think what the physical self was doing. I found coloring books for adults (no, not that kind of adult book 🙂 I find it super duper relaxing to absorb myself in coloring. I don’t consider myself artistic, so I enjoy having the lines to color in. And lots of cancer patients try art in some form… helpful for self expression. I hope you find something you really enjoy in any case. Love the idea of the harp. I can just lose myself in it. I find it very meditative. De-stressing is the key and I hope you re-discover your old hobbies of your youth or find new ones.
So I have a question… I was only on Letrozole for about a month. I came off my hormones which I had been on for almost 22 years and immediately started the Letrozole. I’ve had hot flashes and here recent have noticed the joint pain in my hands and I’m moving much slower in the mornings. Is this normal? I’ve not been on it now for about 6 months. I’m hoping to start either Votrient or Yondelis soon. Any advice out there??
I would try hand stretching exercises-out wide to give the tendons a break-heat helps and ice sometimes-see what works best for you. Also Clonidine helped with hot flashes, along with ice packs. I didn’t have chemo either. While my sarcoma specialist said I didn’t need it because my tumors were removed easily, and also I wouldn’t respond to chemo anyway because I am low-grade.
One big argument in Facebook Groups are scans which are most effective?
And I withdrew names to adhere to HIPPA Laws!!!
I’ve had many types of scans – including CT, PET, MRI, ultrasound & old-fashioned x-rays As far as I can tell, the major difference between CTs & PETs. . .is that CT’s (with contrast) will show the outlines & dimensions of a suspicious spot more clearly — but PETs will give more info about glucose uptake, and therefore disease energy. PETs light up smaller spots that might not be noticed on CTs … most insurance companies ..will cover CTs but make a bigger fuss about PETs, until there is a track-record of useful information for the specific patient… my first PETs had to go thru several rounds for insurance coverage, however, the applications sail thru approval.
I know the differences in scans.. I’m interested in whether they were accurate in those who received them. If they are not accurate, why bother spending the big money. My pet was not accurate…my insurance paid it because lit up places that weren’t cancer. An MRI was always enough for me and CT scan. I Have had tumors in jaw, neck, lymph, lung, ribs and adrenal gland. No one MRI would have detected all of them.
This is a – good question. A PET/CT discovered my initial tumor on a fluke but it was metabolically active. Another PET did not pick-up a met since it already getting necrotic. MY 2 cents is that if tumors are active PET might be helpful in determining growth rates and if chemotherapy is working. In us indolent growers maybe not so much. If looking for a head to toe thing probably a good option.
A year ago in July, after many months of ‘requesting politely’, I got my first PET. A small spot lit up in an upper part of my intestines; I had not felt it & it had never been mentioned on any CTs., colonoscopy & removal of what was hoped to be a polyp… Next PET, the same spot still lit up, but oncologist’s opinion was it was likely healing from surgery. 3rd PET after that and it was gone. At same time, things that had been repeatedly mentioned in CT reports, seen on my liver & adrenal gland but had not grown or shrunk in years of treatment – didn’t light up at all on PET, and sarc-specialist is confident they are hemangiomas & other benign stuff. .. so both scans are useful.
That is why we do a PET/CT imaging of same area (well, actually my entire body). Both together work beautifully!
For me, CTs of chest and MRIs & ultrasounds of abdomen are sufficient for LMS surveillance. I am considered at “high risk” for breast cancer and my breast specialist urges me to get yearly breast MRIs. I did for several years have a series of false positives–after suffering through punch biopsies, needle biopsies, and even the old-fashioned scalpel biopsy. I even had a biopsy of a growth on my nipple that left me in pain for weeks. ALL THE BREAST PATHOLOGY REPORTS WERE NEGATIVE. So I now refuse a breast MRI (which undoubtedly makes my insurance company happy, although they have always paid for anything associated with LMS or breast cancer surveillance.) On the breast stuff, I get physical exams twice per year and have a yearly mammogram and ultrasound. The breast center at the SCCA is painted pink and is very nurturing and kind. Wish the sarcoma clinic was as aesthetic. The oncologists have recommended that my LMS surveillance should be twice per year, however, I will only do once per year. At eighteen years out, I am dealing with doctors who now warn me of the potential of cumulative ionizing radiation issues for multiple CTs. I also get very nauseated when I walk into the sarcoma clinic at the SCCA.
a pet/ct cover a much larger area than CTs and MRIs. pet can show false positive… like when it said i had a walnut sized brain tumor, however, an MRI showed it was a glitch in the film.
So the PET/CT scan were accurate and more sensitive to the CT scan or MRI?
I think it is another one of those things that just depends! In my case, I have had 2 PET scans and found them pretty useless. Nothing lit up (and it should have, I had an active, aggressive recurrence) and it wasn’t useful for comparing sizes to previous CT’s. CTs and MRIs are ‘area specific’… where pet/CT goes from about the nose down to the knees, as a rule.
I know the difference.. I’m looking to see if they are an effective diagnostic with LMS.. They have a lot of radiation and are expensive.. Are they worth it? So far some light up and others do not. My lung met did not light up., it flickered a little.
I thought they were less radioactive than the normal CT or MRI! because that is how some bone tumor was found, and in spite of my big brain scare/false positive, I have a pet/CT ck up and six months later I have an all CT ck up.
FAQ: Radiation Risk From Medical Imaging
I think there is not a single right answer to your question. It truly depends on the part of the body you are screening. You may well be better off with an MRI of the target area. Hard line to walk as in that instance, it may be easier to get insurance to cover a full body PET than a series of MRIs.
No matter what you get done… go to the best imaging facility possible. They’ll have the latest machines (less radiation) and hopefully better skilled technicians. I would always associated a PET with “lighting up” problem areas that may need further evaluation. As I would associate a CT or an MRI as screening a particular / problem area with much greater detail than a PET.
PET is an indicator … I don’t think it is the be all and end all. That’s just my opinion… can see by the responses they worked for some and not for others. I think you can’t beat good old vigilance… check for lumps, be aware of sensations, use all the tools at your disposal at some point or another judiciously and wisely. Maybe consider some radiation “cleansing” foods or methods in your plan.
Thanks for sharing the info but I knew that.. I’m trying to find out the accuracy with LMS.. So far they do not appear to have good accuracy. Why bother with the cost and radiation exposure.. stick with the CT and MRI.. Last thing we need is extra radiation and From what I have heard so far the PET/CT is unreliable.
So your advantage is it “might” show microscopic cells. And it might not and a week later they could start. Everything is at a point in time. If you wanted a full body check to decide chemo or radiation or nothing…. Maybe ok. If your looking for precision… CT scan or MRI depending on body area know your best treatment options yourself.
https://www.youtube.com/watch?v=6qRZ-i6Lprk
https://www.youtube.com/watch?v=1GUqo52XEls