Patient Empowerment Network (PEN) is a 501(c)(3) non-profit organization. PEN’s mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in receiving the best, most personalized care available to ensure they have the best possible outcome.
To learn more about PEN, please visit: powerfulpatients.org
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Thank you for sharing this video. I was diagnosed with polycythemia Vera 12 years ago at the age of 39 along with fibromyalgia. I've had gallons of blood taken but because of the economy and my financial distress. I haven't had a blood draw in 2 years and I desperately need one.
I have CML and have had 5 BMBs. For the first two the doctor didn't even mention the option of Entonox (gas and air) and it was a most unpleasant experience not helped by his exclaiming "Goodness you've got hard bone!". I mentioned this to my Clinical Nurse Specialist and she was annoyed with the doctor that I had not been offered pain relief. My last 3 biopsies have been fine. All with the same lovely doctor who likes me to select some music of my choice to go with the Entonox! I had one done 2 days ago to the strains of "The Beautiful Blue Danube"! ...and I couldn't stop giggling, it was actually a really positive experience! Don't ever let them do it with just local anaesthetic, that just numbs the skin not for when they push into the bone and extract the marrow and a bone plug sample.
You make it sound so feel-good and easy, but if stem cell was the thing that saved you, instead of your happy music you should be calling for that kind of treatment to be available to people who don’t have $100,000 for such procedures not covered by health insurance . I’m sure you spend at least $100,000 on stem cell transplants, because they’re not covered by insurance.
Unfortunately, find a doctor that cares. You give up. It's exhausting trying to find to care. WEEK 5 ...still waiting to get scheduled for iron infusions for not absorbing ferritin. The fatigue and pain makes one not able to plan things. It's a life I've never known.
It is a very humanistic approach. One can have a dozen silent strokes, e.g., but in the end, he or she gets a real stroke and does not need to be treated anymore. It is really beneficial. Patients do not need to worry; they are not aware of it. The cost of treatment is also optimal. Just relax.
I was diagnosed in April 2021. I live in the Philippines where access to MM medicines is limited, unlike in the US and UK, I understand. I responded to Velcade, Lenalidomide and Dexa after almost a year of therapy, was in remission for 10 months and relapsed. I have no insurance and was subsidized by my siblings. (I'm 66 yrs old, no regular income, depleted savings,with minimal pension from the government.) It took another 3 months before I had my next round of chemo with Ninlaro, Thali and Dexa. After 4 months, tests showed I was not responding, do my doctor discontinued the Ninlaro. For the 3rd round of chemo, my doctor prescribed daratumumab with pomalidomide and dexa. The cost of dara is prohibitive for my siblings to subsidize and even pomalidomide costs $400 here, much more than Lenalidomide. As of this time, since September, I have had no major chemo (dara) and erratic treatment with Lenalidomide/Poma/Dexa). Having said all these, my concern is how can we expand the limited access to MM new treatments and drugs here in the Philippines and also make them more affordable? Can an international MM foundation help us with this?
Thank you for this explanation of ET.. 62 healthy otherwise avid walker and runner daily .. are there supplements I can take to lower my inflammation? I don’t consume sugar or alcohol .. non smoker..Thanks Again
Thank you for this video. I too live in the Charlotte NC and had a suspicious spot in my lower left lung, this was in October 2023. I immediately went to an oncologist and he referrer me to a pulmonologist to perform a biopsy. To make a long story short, I went to 3 pulmonologists before I found one I trusted. I had my biopsy in January of this year, I was diagnosed as stage 3a with KRAS g12v mutation. I'm now going through chemo and immunotherapy treatments. If anything has changed I will be scheduled for a lobectomy at Levin Cancer Institute. Your story gives me hope.
After the chemo and immunotherapy my tumor shrank enough so I was a candidate for a lobectomy, I had that 4 weeks ago. The doctors said I was cancer free, but I will be getting some immunotherapy infusions. We'll see.
My mom has primary myelofibrosis, she gets these purple like spots on her skin and easy bleeding, I'm from India where should I get her checked? She's 51 and I'm scared to lose her, please reply
I am diagnosed case of Follicular Lymphoma. Received RCHOP in 2014 inMumbai. Now Recently in 2023 I received six cycles of BR. I have treatment complete now. Taking Inj. Rituximap 600 mg in Nacl infusion maintainence dose. Can you sir help me to stop Recurrence of Lymphoma. 🙏Please😊
We are sorry you can't find any information on Non-Hodgkins Follicular Lymphoma - we know how frustrating this can be. Feel free to check our website for a few resources - powerfulpatients.org/help-by-cancer-diagnosis/non-hodgkin-lymphoma-nhl/
