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feel helpless

tiny one
Posts: 467
Joined: Jan 2009

A friend of mine has leukemia and a rare disorder. They told him chemo wasn't working any more and basically would be giving him blood and platlets from now on. He's middle aged. It's hard watching his wife go through this and feel so sad and helpless. Wish I could do more, it's so unfair this cancer. Please say prayers for B in Illinois.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

While my thoughts are certainly with your friend and his family and friends, it is my strong but humble opinion that cancer is not 'unfair'. There is nothing unfair about it at all, frankly. It preys on young and old, weak and strong, the virtuous and the vicious; it knows no race, no religion; it seeks the rich and the poor, the famous and the anonymous.

Cancer is not unfair. It is what it is.

I do not mean to be unkind. I understand your feelings, I do. I am a survivor, twice, now, and I can remember wanting to feel sorrow for myself while waiting my turn in the radiation room, only to be bumped for another patient...a four or five year old brought in on a gurney from the children's hospital across the street.

It is what it is. That does not make your feeling of impotence in the face of it any easier to bear, I know, and there is nothing anyone can do about that but, as you suggest, if we are so inclined, to pray.

Best wishes to your friend and his family and loved ones.

Take care,

Joe

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

I am sorry about your friend and his family. Like Joe, I feel death in gereral is not a good thing. Cancer crosses all the bounderies and the fact is we know very little about the whole picture. Once we have cancer we seem to see it all over. If we have the ability and means we try to help people out the best we can. I could beat myself up all day about why I survived cancer and a close friend 10 years younger didn't make it. But he would be pretty mad at me for wasting the time I have been given. So help your friend and his family as best you can. Don't feel bad because you can't do enough. I work with people all the time and never feel like I have done enough. I will be praying. Slickwilly

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

I have battled this beast for over 20 months and just got a great report three weeks ago- tumors are disappearing, no brain mets, the Gleevec is working wonders!!
Then, I had a CT scan last Saturday... 5 brain tumors, the oncologist recommending whole brain radiation, wondering if I should do Cyberknife. You get the picture; it all changes so fast and you barely have time to adjust to the last scan when the new one tells you something completely different. It is overwhelming and scary and if we knew what to expect, it would be so much easier to deal with.
I am sorry that your friend is suffering, he is in my prayers. If we could change things, we certainly would. I understand your pain and frustration; it seems to be an ongoing struggle just to maintain a good attitude from day to day and the uncertainty of it all is enough to wear you out, just thinking about it. Try to take one day at a time and lean on your family, friends and your faith when you don't have the strength to go it alone.
That is about the best advice I can give you; it is working for me. And when that isn't enough, there are mental health professionals to get us through the roughest days.
Know that we care and you are not alone.

With much love,
Hollyberry

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

My thoughts are with you hollyberry. Hang in there. Scans that have flipflopped can flipflop again. I've been there.

Hope and humor!

Take care,

Joe

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

HollyBerry. I am so sorry about the scans. I can't imagine your pain as you were writing this post. Like many here I celebrate your good days and understand the consequences of bad days. You and your family are in my prayers. Slickwilly

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

So sorry to hear the negative results on the last CT. Looks like we are both struggling together right now, struggling with like you said - one day things look so much better then with the ring of a phone new results that arent so great.

All I can say is that you know I am here for you as are so many more - we will get you through this - no matter what comes up- together.

Love ya lots, Blueroses.

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Thanks so much for the kindness and words of encouragement. I know you've been through these very things and it sure does help to be going through this with friends. I appreciate you more than you know.
I will, however, be spending the next week or so just pissing my doctors off, trying to get my way. I always have a battle plan (drives 'em nuts!)and it's no different now.
I'm looking into the Cyberknife system, as opposed to whole brain radiation. My onc doesn't feel that's the way to go. Funny, they just don't happen to have the machine at his hospital; it is proven to be much better in terms of damage-control, better survival rates and better longevity.
You know we have to be our own advocates and I'm not going to let this one go; it's just too important.
Blue, I'm with you every step of the way. Hang in there and try not to let the wait get to you; I promise to do the same.
Much love to all,
Hollyberry

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Oh Holly you are soooooooooo right when you talk about fighting for what you think is right for you. I just spent 2 hours on the phone covering my own health issues with a surgery coming up this Friday and an important ultrasound soon after that. When I was booking these two procedures WHY AM I BOOKING THEM BY THE WAY? Sheeeh, I realized that they are both going to hit the same pelvic areas and so if I am having surgery in the area on Friday isn't an invasive ultrasound in THE SAME AREA a bit much only a week later? WHY DO I HAVE TO REALIZE THESE THINGS? SHOULDN'T THE DOCTOR REALIZE THIS?

So I call the gyno's office back and point this out, to which her nurse says 'oh ya, good question'? SIGHHHHHHHHHHHHHHHH. Anywho, on my own - even though I want the ultrasound earlier to see what this freakin new lesion is they found - I opted for waiting a couple more weeks til I heal from this cystoscopy.

THEN when I call back to tell the gyno's office about this they tell me the gyno will be on holidays next week til JULY 22 so won't be around for results til then. WHY DIDNT SHE TELL ME THAT YESTERDAY WHEN I SAW HER? She knew I was anxious about the results. Shoot me now Sweet Jesus. Sigh.

Anywho my point in telling you this Holly is obvious to you I know, COVER YOUR OWN BUTT AND GO WITH WHAT YOUR GUT SAYS. No one was thinking about these two procedures close together in the same general area of my body and it could have produced another problem, which I don't need by the way. lol.

YOU GO HOLLY. YOU FIGHT FOR WHAT YOU THINK IS RIGHT FOR YOU. You are one strong monkey my friend. You are in my prayers always. Isn't it so amazing that when we are physically in trouble we seem to get such shots of emotional strength to allow us to fight for ourselves. Always astounds me. All the best in your fight Holly. GO HOLLY GO.
Love always, Blueroses

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'm so sorry that they suspect brain mets. Would you like me to get an informal second opinion on cyberknife vs whole brain radiation from my radiation oncologist? I will be seeing him on the 17th. He's gotten used to my millions of unrelated questions I always carry to him from Message Board friends.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

You'd think after all the posts I've made here that I would no longer double post. Sorry. Since I double-posted, I'll use this EDIT to post some information on Cyberknife radiotherapy for Hollyberry:

How is CyberKnife Different from other Stereotactic Radiosurgery Systems?

Stereotactic radiosurgery has been used for more than 30 years to treat benign and malignant tumors. Radiosurgery does not remove the tumor or lesions, rather it uses high doses of radiation to destroy the tumor cells and stop the growth of active cells. For this treatment, multiple beams of radiation produced by a linear accelerator are directed at the abnormal lesion within the body.

Several stereotactic radiosurgery systems are available, with the most widely-used being the Gamma Knife and modified linear accelerators. CyberKnife's key advantage over other systems is its precision, enabling physicians to maximize the amount of radiation that reaches the tumor while minimizing exposure to healthy tissue and organs.

CyberKnife is the only radiosurgery system to combine a linear accelerator, a robotic arm and the image guidance system. With its unique precision capabilities, the CyberKnife can target lesions that are unreachable by other radiosurgery systems. It is also the only system that can continually monitor and adjust in real-time for patient movement during treatment. For procedures such as the Gamma Knife, patient movements are restricted through the use of a frame that must be bolted to the head with skull pins. The CyberKnife can locate and treat tumors without the use of this painful, invasive head frame. Also, unlike Gamma Knife, this precision can be equally extended to targets in the body (not just the brain, as with Gamma Knife) including targets that constantly move with breathing or with heart beats.

What is Radiosurgery and how is it different from Radiotherapy?

Stereotactic radiosurgery (SRS) combines the principles of stereotaxy, or 3-D target localization, with multiple cross-fired beams from a high-energy radiation source to precisely irradiate an abnormal (oftentimes cancerous) lesion within a patient's body. This technique allows maximally aggressive dosing of the target, while normal surrounding tissue receives lower, non-injurious doses of radiation. The ideal objective is the ablation or destruction of the targeted area without damaging any normal tissue outside of the defined target area. Stereotactic radiosurgery differs from conventional radiotherapy in several ways. The efficacy of radiotherapy depends primarily on the greater sensitivity of tumor cells to radiation relative to normal brain tissue. With all forms of standard radiotherapy, the spatial accuracy with which the treatment is focused on the tumor is a secondary concern; normal tissues are protected by administering the radiation dose over multiple sessions (fractions) daily for a period of a few to several weeks. In contrast, radiosurgery, by its very definition, requires much greater targeting accuracy. With SRS, normal tissues are protected by both selectively targeting only the abnormal lesion, and using cross-firing techniques to minimize the exposure of the adjacent anatomy. Since highly destructive doses of radiation are used, any normal structures (such as nerves or sensitive areas of the brain) within the targeted volume are subject to damage as well. Typically, SRS is administered in one to five daily fractions over consecutive days. Nearly all SRS is given on an outpatient basis without the need for anesthesia. Treatment is usually well tolerated, and only very rarely interferes with a patient's quality of life.Stereotactic radiosurgery has been used for more than 30 years to treat benign and malignant tumors, vascular malformations, and other disorders of the brain with minimal invasiveness. To date, more than 200,000 patients have been treated worldwide with radiosurgery. The success of SRS is based, to a large extent, on the use of a multidisciplinary approach, which requires close interaction between surgeons, radiation oncologists, medical oncologists, physicists, diagnostic radiologists, technicians, and nurses. This specialized team is responsible for the selection of appropriate patients for SRS, treatment delivery, and long-term follow-up.

The CyberKnife system offers an entirely new approach to stereotactic radiosurgery, one that does not require fixing a frame to the body and offers superior precision to minimize the effect on healthy tissue. More than 10,000 people worldwide have been treated with CyberKnife, a noninvasive alternative for patients who are not ideally suited for or unable to undergo traditional surgery. The benefits include:
• Non-invasive treatment
• No anesthesia
• No pain
• No incision
• No blood
• Immediate return to normal activity
• No metal head frame or skull pins for improved patient comfort
• No hospitalization
• Minimizes radiation exposure to healthy tissue and organs
• Continually compensates for any movement during treatment to ensure accuracy
• Lesions that previously received the maximum allowed dose of radiation can be treated

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Dear Linda,
Thanks for the info.- I'm seeing the radiologist tomorrow and, hopefully, I can do the Cyberknife. I think it depends on the number of tumors and their size. I am not giving up without a thorough investigation of my options. I've worked in the medical field for 10 years and know too many things! YIKES!!
Please know that your hugs and help are welcome and appreciated. You have been such a kind and thoughtful friend to all of us and your contributions have made this board a better place.Here's hoping we all get the right treatments and follow-up and this beast is beat once and for all. You are always in my thoughts and prayers and I'm hoping,as you finish your radiation, that you get a huge NED. You certainly deserve it.
With much love,
Holly

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