He is being used as a Guinea Pig....BUT Good Luck!
- Roseville, MI
- Member Since Mar 2013
Their Diagnoses (3)
- Spouse/Partner: Choriocarcinoma
- Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 4 years ago, Male, Age: 51, Stage III
- View this journey (21 Experiences)
- Caregiver: Sarcoma, Lung Cancer
- Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 1 year ago, Male, Age: 52
- View this journey (4 Experiences)
- Caregiver: Sarcoma - Adult Soft Tissue Cancer
- Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: 12 months ago, Male, Age: 52, Stage IV
- View this journey (1 Experience)
debshephard wrote on Daphne's wall
Welcome to WhatNext. Sorry that you had to find us this way! It's a hard road with lots of ups and downs. My husband is battling Rhabomyosarcoma (started with testicular cancer 4 yrs ago and morphed into this in his lungs) and so far we have been fighting this for the past year. He is only 51. They tell us they have children's protocols but not good ones for adults. However, I can say that for approx a year the "conventional" chemo with Doxorubricon kept it at bay. When it no longer worked (actually he had received the maximum lifetime dose for the Doxo), they put him on a drug trial of Lenvantinib which for a few months seemed to keep the tumors from growing (much-1% change).Then he got very sick with resp virus (RSV) and had to stop the trial drug for two weeks. This seems to be a setback. The next CT scan will tell us more. Good luck with your treatment and it helps to stay positive!
debshephard asked a questionSarcoma - Adult Soft Tissue Cancer
Anyone have experience with the drug Lenvantinib?
No experience (apologies but I am happy to say because I went through more than enough myownself) but I did look up the side effects:
Talk to you doctor, of course, but an extract of garlic (Kyolic Garlic liquid extract) can reduce high blood pressure by as much as 75 points. There is nothing in the product but aged garlic extract, water, and some residual alcohol from the extract.
Have him to please eat lots of garlic in food too.
There is also a product called "IP6" from plant fiber
Again, speak with your doctors. The pill can reduce absorption of iron (not a terrible thing if your iron is from cereal boxes) and calcium (which most of us have plenty of, at least until we get treatments). I took IP6 for years while waiting for a diagnosis (I knew something was not right and begged a plethora doctors to please remove the little growth which the doctors all dismissed as a small wart or hemorrhoid for 13 long years until I developed an affection for organic chocolate ice cream which grew the tumor along with thecrest of me big enough for the myopic doctors to agree to finally remove) so I can assure you it isnt so dangerous but, again, ask your doctor.
I grow a plant called "moringa oleifera", which I sell as a tea. It contains more vitamins and minerals than you can shake a stick at (A, B of various numbers, folate, C, E, calcium, potassium, iron, beta carrotine, essential fatty acids, and iron). Moringa has even more goodness.
It also contains quercitin which reduces high blood pressure and has other nice benefits. You also find quercitin in citrus rind..zest .. and pith.
You know the drill by now. Ask your doctor.
Moringa may also lower blood sugar but the studies are few and preliminary.
It is also anti inflammatory like turmeric and pomegranates and, like almonds, flaxseed & oats, are anti-inflammatory.
I sell it as a tea in bags or as a freshly dried powder to add to smoothies and sprinkle on salads:
There are other side effects listed for lenvatinib. Please write again if your hubby experiences any of them. Enzymes can help ward against loose stool but very little can stand against these powerful drugs in that department.
Moringa will also help to counter the fatigue.
If your hubby develops a difficulty eating, I can help. He may not suffer all the side effects. Please write again as soon as you need help, if you do.
LiveWithCancer (Best Answer!)
Here's what I know about clinical trials ... or being a guinea pig, as Barry calls participants.
I got into a trial for nivolumab (as it turns out - i didn't know at the time) when traditional treatments quit working. There were all sorts of potential side effects associated with nivolumab.
In fact, i am the only person remaining in my trial in the Dallas area. That's been the case for several years. Everyone else has dropped out either because the trial drug was not working for them or because their side effects were too bad.
But, here's the deal. Your husband will be watched by his oncologist and researcher very closely. I had to have scans every 6 weeks for a couple of years. (They finally moved them to every 3 months about a year ago). All sorts of blood tests will be conducted. If certain side effects that are treatable arise, your husbannd will be given appropriate medications or treatments. At the slightest complaint, my oncologist whisks me off to another specialist, even when i believe it is unnecessary.
If at any time and for any reason, your husband can quit the trial without repercussions.
So, when i joined my trial, i thought inwas exactly as Barry says, a guinea pig. And, that was okay with me. I thought my life was nearly over. I never dreamed i would personally benefit from being part of my trial. I joined it purely and simply to help researchers learn for future lung cancer patients. No one was more surprised than me when the trial drug stopped my tumors. And, i personally suffered minimal side effects. The worst has been a malfunctioning thyroid, easily corrected with a cheap little pill each day.
I hope and pray that your husband won't suffer any side effects and that the trial drug works great for him. If, perchance, there are side effects that break the deal, get out of the trial and seek another treatment plan. Especially with a Phase 1 trial, there's really little way to know what to expect.
Good luck and please let us know how he is doing.
debshephard shared an experience
Clinical Trial: Because the standard chemo treatments have stopped working (tumors in lungs are growing again) the doctor enrolled him in a study involving lenvantinib to see if this will be able to halt the growth of the masses. It is kind of scary reading all the side effects associated with this medication but we are optimistic that if it works the company will supply us long-term with this drug, as long as it is helping.
debshephard shared a photo
Can anyone give us advise about fingernail problems with chemo.? After going through all that chemo and with more to come, my husband's nails are developing vertical ridges and cracking down to the nail base where they are hurting and bleeding. We have tried nail polish and band-aid mesh to protect but not really staying put. Is there fiberglass or something that can fortify the nail? Thanks so much.
We posted an article about this problem a year or so ago. It's fairly common. Here is a link to the article>> https://www.whatnext.com/content/blog/posts/what-s-happenin g-to-m y-nails-nail-changes-from-chemo