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Author Topic:   Cancer Survivors
RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 1 of 325 (374249)
01-03-2007 10:30 PM


My name is Paul Smith
I'm 59
I have Follicular Lymphoma
and I'm a survivor
Here's an update for my 'icon' self:
Links:
Welcome lymphomation.org - BlueHost.com
http://www.cancerbackup.org.uk/.../TypesofNHL/Follicular
http://pleiad.umdnj.edu/hemepath/follicular/follicular.html
What Is The Diagnosis and Staging of Follicular Lymphoma?
Follicular Lymphoma | Lymphoma Survival Online Community
lymph -noun
1. Anatomy, Physiology. a clear yellowish, slightly alkaline, coagulable fluid, containing white blood cells in a liquid resembling blood plasma, that is derived from the tissues of the body and conveyed to the bloodstream by the lymphatic vessels.
I was first diagnosed in September 2005, and underwent chemo-therapy for 4 months, 6 sessions every 3 weeks. This reduced the lymphoma to baseline levels and I was declared in remission.
It also left me with little energy and strength, and it took me another 3 months or so after treatment was finished to regain enough strength and energy to get back on my bicycle and train for the annual ride with a friend (who does a mile for every year on his birthday). He's a young whipper-snapper, so we did his 57 miles in august, and I felt that I was well on the way to recovery.
In november the lymphoma came back from remission, more aggressive than before, and I am now in chemo-therapy again. I've had the second course in this session. The drugs are different and more aggressive as well -- these cancer cells survived the last session, so the same drugs will not help anymore - that's evolution for you.
I did not lose my hair last time, but I am losing it this time (but it's only temporary ned). Chemo-therapy tends to attack all the fast growing cells in the body, so in addition to the cancer cell growth it can affect hair growth and the growth of new brain connections ...
One of the other effects of chemo-therapy is called "chemo-brain" and it affects short term memory and the ability to operate at your full mental capacity. Going in the first time I was not aware of how much this affected me. I noticed the loss in memory from continually forgetting little things, like shopping lists, and the ability issue from doing sudoku puzzles, but I wasn't really aware of the depths of this loss until later coming back out and regaining most if not all (I think) of those abilities in the months following the end of treatment.
I expect this to happen again this time, so I expect my input here to dip in quantity and quality for a while. It is not intentional, and I don't believe it will be permanent.
I've talked to other survivors and they have similar stories. I expect there are a number of people here who also have similar experiences and may want or need to talk about them. I am interested in those stories.
Because lymphoma is diffuse throughout the body radiation cannot be used without risk of damage to several organs. Chemo-therapy cannot eliminate it either, so this means that this cancer as yet has no complete cure, just treatment to hold it at bay. Research is focusing on stem cell and bone marrow transplants coupled with extreme chemo-therapy designed to kill as much of the cancer as possible - along with all the white blood cells and bone stem cells that produce new white blood cells, then injecting the new stem cells to make new lymph, hopefully without the cancer. This is the best hope for cure of this kind of cancer.
Of course fetal stem cells would offer even more chance of cure without rejection problems, but we are now 6 years further from this research -- due to narrow-minded religious dogma derived policy based on ignorance that declares unused and unwanted fetal cells more important than existing human life. So while I may have had some frustration at fundamentalists before over this issue, it has become a little personal now. I don't want to discuss the issue of stem cell research here, I just note this so that those who do have an objection to stem cell research can understand that my anger may be invoked at it. Nor will I apologize for or excuse my opinion on this matter -- it is how I feel.
If you want to help, you can sign up to World Community Grid and let your computer work on solving cancer among other problems confronting human life on this planet.
See HIV Cancer Diabetes MDA and more - Solve on your computer for details:
quote:
More info (if you need it) at:
../projects_showcase/viewResearch.do
To join go to
World Community Grid
After you join as a member, join our team by selecting "join a team" and then go to {T section page 3} to pick "Team EvC" to join ("Team" is part of the team name, so we are the Team EvC Team).
To download the BOINC agent go to
World Community Grid
I recommend the BOINC agent over the standard UD agent, as that one can cause jerky mouse action unless throttled down, and the throttle mechanism is not that good.
This too has become personal for me, but it is for ALL cancer victims (as well as Muscular Dystrophy and AIDS\HIV victims), not just for me: it can be for someone you know personally.
In closing I would like to say
  • I would like to discuss other stories of survival.
  • I do NOT want to discuss the pros and cons of stem cell research here.
  • Some people will feel they need to pray for me - personally I don't believe in the "power" of prayer (being a Deist), but go ahead if that is what you feel you need to do - all I ask is that you also let your machine do some "buddhist prayer wheel" type work by signing up at worldcommunitygrid.org and running the program with the unused portion of your computer.
  • I expect to survive this round, and come out riding 59 miles in august this year ... and getting my hair back.
Thank you for your support.
Edited by RAZD, : none needed
Edited by RAZD, : .
Edited by RAZD, : glitch in translation

we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


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RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 3 of 325 (374327)
01-04-2007 7:18 AM
Reply to: Message 2 by AdminPhat
01-04-2007 1:07 AM


Re: Inspired trials and tribulations
Yes this is me. Thanks for promoting the topic.
Edited by RAZD, : .

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RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 12 of 325 (374786)
01-05-2007 6:52 PM


Thanks All.
I have tears in my throat and a lump in my eyes (or something like that).
It is appreciated.
Edited by RAZD, : .

we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


• • • Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click) • • •

  
RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 14 of 325 (374819)
01-05-2007 8:40 PM
Reply to: Message 13 by Buzsaw
01-05-2007 7:30 PM


Buz, thanks.
One of my links is for you, and I repeat it here:
Follicular Lymphoma | Lymphoma Survival Online Community
quote:
Although each case is different, the best chance for success comes from learning about follicular lymphoma, including treatments...what they can and cannot do...and combining that with the best in scientifically-based natural strategies targeted specifically to follicular lymphoma to help hold the lymphoma in check. This is known as an *integrative* (not alternative) approach, meaning that it incorporates the best in conventional treatments with the best in evidence-based natural therapies at the appropiate time.
This involves a combined approach by the individual.
Think about it. Perhaps they need each other to reach the full potential eh?
Edited by RAZD, : .

we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


• • • Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click) • • •

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RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 20 of 325 (375516)
01-08-2007 10:17 PM
Reply to: Message 17 by DorfMan
01-08-2007 10:56 AM


Re: I cannot believe how
Thanks.
... this 'fundie' is for stem cell research.
Not surprised, know what I mean?
Message 18
It would comfort this "gunfighter" more to know that your computer is on the Grid.
We need one more to get to 50 on the team ... not that I want to buffalo you.
Edited by RAZD, : buffalo
Edited by RAZD, : .

we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


• • • Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click) • • •

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RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 24 of 325 (380772)
01-28-2007 7:31 PM
Reply to: Message 1 by RAZD
01-03-2007 10:30 PM


3 down 3 to go
I've had my third chemo for this session, and am certainly feeling the effects in terms of energy level, aches and pains.
http://just-cancer.e-healthsource.com/index.php?p=news1&i...
quote:
WEDNESDAY, Nov. 17 (HealthDayNews) -- For years, doctors have puzzled over the fact that some patients with follicular lymphoma succumb to the deadly blood cancer within a few years, while others survive for decades, even though their tumor cells look the same under the microscope.
Genetic differences -- not in lymphoma cells, but in immune cells surrounding the tumor -- may determine how aggressive a particular case of follicular lymphoma turns out to be, they said.
He said studies have already shown that treatment with immune-based anti-cancer vaccines "does result in remission in some patients."
Follicular lymphoma is a type of white blood cell cancer from the non-Hodgkin's lymphoma family of lymph node malignancies. Follicular lymphomas involve the uncontrolled growth of a specific type of immune white blood cell, called B lymphocytes. The disease makes up about one-fifth of all non-Hodgkin's lymphomas, with an incidence rate of about six cases per 100,000 persons per year, experts say.
Unfortunately, research into controlling follicular lymphoma has yet to achieve the success seen in other blood cancers, Staudt said.
"In essence, chemotherapy isn't able to prolong the survival of these patients," he said. "It's given to them, but it's not curative."
Still, oncologists have long noticed that some patients with follicular lymphoma die with two or three years of diagnosis, while others live with the disease for upwards of 20 years or more.
Genetic comparisons of aggressive vs. less aggressive cancers have so far turned up no major differences, so Staudt and his team decided to investigate the genetics of immune cells living in the immediate vicinity of the lymphoma.
Examining tissue biopsies from 191 patients, the researchers found that "it was the [genetic] character of the immune cells that was dictating whether you had a very slow-growing form of follicular lymphoma, or a more rapid form," Staudt said.
"This may help in the decision of how to treat the patient," he added. "For example, if a patient has a bad prognosis, one might decide for a more aggressive treatment, because standard treatment may have little chance to increase the life expectancy of the patient."
A more accurate prognosis should also help clarify the future for worried patients, Staudt said. "Imagine that you have a lump -- of course you're very concerned, and it comes back [from biopsy] with a diagnosis of follicular lymphoma. But in the next sentence, your doctor says, 'But the median survival of patients with your type of follicular lymphoma is between 10.8 and 13.6 years.' That's going to give you a whole different outlook on your disease."
Staudt said research into a follicular cancer vaccine is already under way, using lymphoma cell antigens to "prime" nearby immune cells to attack the malignancy.
"In some patients, it clearly makes their tumors go away," he said. "To me, that's another indication that this tumor is one of the cancers that can respond to the immune system."
The more you know about a system the more you are able to handle it eh?
Mine is aggressive and I am getting antigens - as I did the first time. So far it seems to be knocking the tumor cells out, but I don't hold much hope for complete eradication or long term remission: my last experience tells me otherwise.
The only real hope out there is replacement of the immune cells with new ones -- either from bone marrow stem cells from my body (auto) or from a donor (allo) transfusion, after four days of chemo and then 3 weeks in intensive care until new immunity takes over. Followed by 3-6 months of recovery.
It would be nice to have some universal donor cells that one wouldn't have to worry about rejection and related chance of mortality.
http://ubb-lls.leukemia-lymphoma.org/...m14/HTML/001513.html
quote:
My father has been suffering with non-H, B-cell large, follicular cancer. He has been through Chop+R and recently went to RICE followed by White Blood Cell transplant. Last week marked 30 days after transplant and he had CAT scan that showed cancer in abdomen area did not shrink (about 6 cm).
His doctor is now recommending Radiation.
I'm getting CHOP-R. Transplant is the next option.
The Leukemia & Lymphoma Society BBS
great. another forum board ...
Thanks all for your support (in emails as well as on the board).
Edited by RAZD, : .

we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


• • • Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click) • • •

This message is a reply to:
 Message 1 by RAZD, posted 01-03-2007 10:30 PM RAZD has seen this message but not replied

  
RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 26 of 325 (380806)
01-28-2007 9:29 PM
Reply to: Message 25 by tyler121515
01-28-2007 9:15 PM


Thanks tyler. I can't imagine spending a year in hospital and how strange that must have been, the stress on your parents. 16 years remission is good -- my mom's been going 10 years now with the breast cancer (and still smokes).
Nice of them to name the town for you.
Edited by RAZD, : .

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RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 27 of 325 (393309)
04-04-2007 10:29 AM


THANKS
I just got this update from WorldCommunityGrid:
quote:
World Community Grid is pleased to announce that the Help Defeat Cancer (HDC) project is finished. The last work units have been sent out and when the final results are returned, the project will come to an end. This project, which launched on July 20, 2006, will have run for just over 9 months by the time the last results are returned. During this time 88,000 members will have donated 2,900 years of computer time on 138,000 different computers. This is a significant contribution to cancer research.
But the end of this project is really only a beginning. Based on the results, the researchers who are working on this project have a very aggressive plan to make Tissue Microarray technology an integral part of early cancer detection.
Early detection is to the benefit of all.
As a side note, I have now finished my second course of chemo-therapy. This should knock my cancer down to background levels, and this will be measured on Friday (but I won't know for a while). Then it will be a matter or moving on to a more aggressive program to hopefully eliminate it from my lymph system and prevent another recurrence. That will start in mid-May, and I am NOT looking forward to it (a week of chemo, bone-marrow transplants, hospital food, etc etc).
My energy level these days is low. A two-block walk to the coffee shop leaves me winded. I hope to regain sufficient energy to do my friends bike ride before the hospital treatment. We are talking about Cinqo de Mayo and possibly doing it (60 miles) over two days.
Anyone in the area that is interested in joining, we will be using the east bay bike path from Bristol RI to E. Providence. Time and details to follow.
Thanks.
Edited by RAZD, : .

we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


• • • Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click) • • •

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RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 33 of 325 (396650)
04-21-2007 3:16 PM
Reply to: Message 32 by Taz
04-04-2007 7:53 PM


skin cancer?
Short answer: I don't know. Long answer: I still don't know - ask a doctor.
It's possible that what you lost was the external layer of skin, and that when you sunburned the area that the new skin under the burn extended over the old scrape. I do believe (having grown up on the coast) that salt water helps healing.
The kinds of things that I have seen where healing is a factor is sores, rather than scrapes and cuts.
Edited by RAZD, : .

we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


• • • Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click) • • •

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RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 34 of 325 (396652)
04-21-2007 3:28 PM


Status check
The chemo is over (ended at the end of march) but recovery of energy is slow. Started training for the bike ride today, 13.3 miles at an average speed of 10mph. Not stellar performance for me, but good enough for now, something to build on. More again tomorrow, and if the weather holds it is time for riding to work and back. That'll give me 4.5 miles each way, and possible more on the ride home.
Cinquo de Mayo is the day for the big ride here in rode rowed road Rhode Island.
Then off to Dana-Farber ... they say they have internet access, but (a) it's dialup and (b) I don't know how much energy I'll have. I'll try to keep ya posted on the progress.
Thanks.
Edited by RAZD, : .

we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


• • • Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click) • • •

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RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 36 of 325 (396837)
04-22-2007 1:03 PM
Reply to: Message 35 by jar
04-21-2007 3:41 PM


Re: Status check
9.8 miles this morning. You always notice the sore spots the second day. Had to go back for more padding, butt it was okay after that

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RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 39 of 325 (397011)
04-23-2007 9:01 PM
Reply to: Message 38 by DorfMan
04-23-2007 9:44 AM


Re: You should oughta ...
Thanks but you can keep it (and use it in style).
Actually the one I have is gel padded as well. It's just that what gets sore is where the contact is (I suppose one could change seats between rides to alter where the sore point is?)
Edited by RAZD, : .

we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


• • • Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click) • • •

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RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 43 of 325 (397908)
04-28-2007 10:06 AM
Reply to: Message 42 by DorfMan
04-24-2007 9:53 AM


Really Bummed Now
The docs are telling me that the preliminary treatment I'll get on the 4th means that riding on the 5th is not recommended -- if I want to keep by bladder and associated organs (I'll need to drink lots of liquids to flush out some of the chemicals and getting dehydrated would inhibit this process).
Looks like I'll need to wait for after I get out to pick up this gauntlet. And it may take until September to be in shape.
On the plus side they have wifi in the wards, so I'll have 24hours a day access to alleviate boredom. If I have the energy.
Edited by RAZD, : .

we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


• • • Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click) • • •

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RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 45 of 325 (399466)
05-05-2007 8:25 PM


so it begins
I started my next level yesterday: mobilized to boost my stem cell production with a dose of cytoxin that was 3 to 4 times the dose during my other chemo sessions. Last night felt like a truck ran over me or some horse had kicked me: stomach aches kidney aches headaches acheaches... dizzy and groggy at once. Tomorrow I start with injections to boost new peripheral cell production (they are the stem cells that produce new blood cells - white red and plateletts). Two shots a day for a week and then they start "harvesting" the peripheral cells to culture and preserve (having enough in reserve for several injections if necessary). The 22nd is the date for my incarceration in the transplant isolation ward. They will have wifi, so I will be able to post pictures and complaints of hairloss and body sores. Three weeks in patient in semi-ICU. Then 30 days under extreme care conditions in home detention, before tentative release to general public ... as long as I wear face mask and gloves, carefull not to catch a hint of a bug until my renewed imune system recovers it's ability to reject the slings and arrow of life.
No appetite for riding today.
Edited by RAZD, : .

we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


• • • Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click) • • •

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RAZD
Member (Idle past 1521 days)
Posts: 20714
From: the other end of the sidewalk
Joined: 03-14-2004


Message 51 of 325 (400652)
05-15-2007 9:46 PM


Round 1 goes to RAZD
The stem cell harvesting started on Monday. The told me 2 to 5 days, likely 3 to 4 and maybe not the first day (peripheral cells may not be up to a level to be harvested). They also said minimum 2 million peripheral cells needed to be collected before harvesting was complete.
Day 1: 6 million harvested.
Glad I am, if for no other reason than that the harvest needle was 1mm diameter: that's kind of huge ... imnsho ....
Now I get a couple days off. We spent today enjoying Boston and the Museum of Fine Art (special display on Hopper, one of my favorites).
Enjoy.
Edited by RAZD, : .

we are limited in our ability to understand
by our ability to understand
Rebel American Zen Deist
... to learn ... to think ... to live ... to laugh ...
to share.


• • • Join the effort to solve medical problems, AIDS/HIV, Cancer and more with Team EvC! (click) • • •

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