Sheilas story

[shemay]

Hi ChemoMan

Thank you for the welcome.

I am here to learn from others suffering from cancer and I am also hoping to be helpful to others who might like to do some research on the diet, supplements,and alternative protocols that have proven effective for me and other cancer patients that I personally know.

In April 2004 I was treated for what my doctor thought was pneumonia. After a month on antibiotics my condition worsened and I was taken to hospital by ambulance gravely ill. Xrays and scans showed a huge tumour(approx 10cmx10cm) in my chest cavity had caused an infection in the right lung and the collapse of the center lobe of that lung. The whole lung was entrapped and surgery was needed to clear away the infection and un entrap the lung. At the time of surgery an enlarged lymph node was noted on my heart and needle biopsied. This is where the Marginal zone B cell non Hodgkin's lymphoma diagnosis came from. The large tumour was inoperable and later scans showed smaller tumours in both lungs inoperable as well. The oncologist I was referred to told me I would need CVP/CHOP in order to "perhaps" save myself but because of my age and the treatment experiences of several family members and friends I decided to take an alternative path instead.

I certainly understand one being cautious about recommending a treatment or supplement with out having proof of it's efficacy through double blind studies.
Unfortunately though, when it comes to natural medicine there is no one interested in spending the huge amounts of money needed to carry out such studies. Doctors and others who practice alternative health care depend very much on anecdotal as well as scientific evidence when treating their patients and there is quite an impressive amount of both regarding the efficacy of glutamine when treating peripheral neuropathy caused by chemotherapy. I personally have been witness to this with many cancer patients at the clinic I go to for treatment.

As an example, for many many years doctors offering traditional treatment would never consider intravenous vitamin c as a viable option to chemotherapy or even as an adjunctive therapy. Now there are many oncologists in the USA, Canada and elsewhere stepping outside the box and using it when their patients request it. Alternative practitioners have been treating various cancers with high dose vitamin c for decades since Nobel Prize winner Linus Pauling popularized the use of this powerful supplement during the 1970s, and it is through word of mouth, from the many patients who have experienced a successful outcome using this supplement, that traditional medicine is finally accepting it. This was part of the alternative protocol I used to return to good health and I give it a great deal of credit for my good outcome.

Thanks for the information re PMs. It was helpful. I'm sure it won't take long for me to become comfortable using this new to me forum once I have the time to browse through it.

Best regards
Sheila

[ChemoMan]

Hi Sheila

Some aspects of your story are mysterious. First off there are no lymph glands on the heart. There are ones close to the heart but not actually on it. Secondly MALT lymphomas can be treated by antibiotics as they are caused by Helicobacter pylori so it is likely that any recovery you made was due to the antibiotics. Once the helicobacter infection was eradicated it was a matter of time before the cancer cleared. If your story is true then you are very lucky indeed. After a watch and wait strategy Antibiotic therapy is one of the first line of treatments for MALT.

Regarding Vit C , this has been studied ad nauseum and has been found not to affect the course of cancer. There have been big studies on this and has shown no real promise at all for lymphoma.

Malt lymphomas are very different to common B cell lymphomas . Firstly it is an extranodal type and does not originate in the lymph nodes. Secondly it is not an aggressive cancer compared to DLBCL, hodgkins and some T cell lymphomas, and thirdly it is the only lymphoma directly associated with an infective agent, being the helicobacter pylori.

If you are coming here to encourage peole to take natural remedies which do not work, when they can receive medication to save their lives then I will ask you not to. There are plenty of websites around that will accomodate you, but this is not one of them.

CHOP is used with Rituxam now and always R CHOP is the chosen protocol. Since its introduction DLBCL lymphoma for one is now considered curable. Hodgkins has been considered curable for a long time now. To encourage people to use natural modalities with dubious credentials when a perfectly reliable treatment exists , with excellent stats for cures, is in my opinion a dangerous thing to do.

Cheers

[shemay]

Hello ChemoMan

You are right about there being no lymph nodes ON the heart. The cancerous lymph node that my surgeon did the needle biopsy on was located on fat that was attached to the heart. That is exactly what he told me. I certainly did not mean to misrepresent this.

My diagnosis was not MALT lymphoma. Marginal zone B cell lymphomas may occur either in the lymph nodes (nodal) which was my diagnosis, or outside the lymph nodes (extranodal. Nodal marginal zone B-cell lymphomas are very rare lymphomas; they are also known as monocytoid B-cell lymphomas. It is the extranodal marginal zone B-cell lymphomas that are often associated with autoimmune disease or infection and are also known as mucosa=associated lymphoid tissue (MALT) lymphomas. When I was first diagnosed and researching the diagnosis I found the following information on PubMed which I am sure you are familiar with as a reliable source of information. Hopefully I am not contravening this board's rules by quoting the following... "nodal MZL is more aggressive clinically than low-grade MALT-type lymphoma. For example, patients with nodal MZL had a significantly higher incidence of advanced-stage disease, including peripheral and paraaortic lymphadenopathy, than those with MALT-type lymphoma. Moreover, patients with nodal MZL had lower 5-year overall survival and failure-free survival than patients with MALT type lymphoma.:

I did not come to this site with the intention of trying to encourage others to take the path that I did. Sincerely, my only intention was to share some of the information about supplements and diets etc. that I know from experience are effective. I would never advise anyone not to follow the advice of their doctors. What a great responsibility that would be for anyone to take on. I only wanted to offer information for others to research for themselves so that they could come to an informed decision regarding treatment options.

The FDA gave permission in 2007 for clinical trials to be held on the effectiveness of intravenous vitamin C. Only those who have exhausted all other conventional treatment options are eligible to receive the therapy. From what I understand, Cancer Treatment Centers of America is authorized to do these trials. I understood the trials would end in 2009 and I am anxiously awaiting the conclusions. Surely, if a patient considered terminal by their doctors recovers after this protocol is used, one must seriously consider this to be an effective treatment. I have a friend at the clinic I go to who was considered terminal with prostate cancer in late 2006. His cancer had spread to every organ and bone in his body from his groin to his head. All documented. He began a natural protocol which included intravenous vitamin c/lipoic acid along with a 21 day course of 714X. Within just a few short months all scans were NED.

I find it very unfortunate that there are those who would deny others the opportunity to learn of and research for themselves, alternatives that have been proven anecdotally and scientifically to be effective. That too is a great responsibility for anyone to take on.

If, as an example, I would post a link to information about the value of vitamin D in preventing and fighting cancer, would you consider that to be unacceptable? Or a link to the many many clinical trials on the effectiveness of Avemar for a wide variety of cancers?

If so, then indeed I am in the wrong place.

Respectfully
Sheila
p.s. I truly regret that you seem suspicious of my story. I am a 75 year old senior citizen who considers my return to good health a gift and my only intention as I stated before is to share the knowledge that I have learned through it all.

[ChemoMan]

Hi shemay

Thanks for clearing that up for me it will help me understand what has gone on and hopefully clear up the mystery surrounding your story. Note that I said mystery and NOT suspicion.

You will notice that I moved your post to the complimentary forum which is where it belongs.

Let me tell you why I think the way I do. After about 6 to 8 months of worry and 3 biopsies I was finally diagnosed with DLBCL stage 2A bulky, around christmas of 2007. I started my treatments in 2008 , 6 rounds of R CHOP. Prior to starting treatment my nodes in my left armpit were the size of small apples and I had severe lymphodema of my left arm, my arm was so swollen I could not put on shirts anymore. I also had nodes in my neck enlarged. 4 days after starting chemo the nodes under my arm had shrunk so much I could not find them.....4 days I was told the shrinkage would be dramatic but to me it was miraculous. This is a very common scenario in DLBCL so much so they give you medication to deal with the toxic compunds released as the tumours rapidly break down, a condition known as tumour lysis syndrome.

If I had chosen alternative treatments I would be dead by now and there is nothing that will convince me otherwise. My treatment while not a cakewalk was nowhere near as bad as I expected.

So thats it in a nutshell. Thats why i think like I do and why I have faith in the treatment I recieved for the cancer I had. To convince others with DLBCL to take alternative treatments, is in my opinion, being guilty of manslaughter, sorry but thats my opinion.

Feel free to post re your treatments here. I would also ask you to read the forum policies carefully as transgressions are dealt with quickly.

Thanks

[shemay]

Hello ChemoMan

I certainly understand why you have so much faith in the treatments that you took and so you should. You are right. Your speedy recover was miraculous.

I've just finished reading an article regarding your type of cancer presented by the National Cancer Institute which describes the different types of DLBCL and the percentages of positive responses for them using current treatment protocols. It truly is amazing how far modern medicine has come in understanding the differences in the two types of DLBCL and how they differ in their response or non response to various chemo protocols because of particular DNA mutations. This information was just published last year so obviously you had the very best of up to date care. I've bookmarked the link in case you would be interested in reading the study results. Let me know.

You and your team of health care givers truly deserve a big pat on the back. I'm sure your story has inspired and given hope to many others.

You may be right that you might not have survived had you chosen any other path to take. Your situation certainly was dire.
I in no way want to be argumentative here but when you say "To convince others with DLBCL to take alternative treatments, is in my opinion, being guilty of manslaughter, sorry but thats my opinion. " I would just like to say that in my opinion to "convince" anyone to take either one path or another is immoral. No one on this earth can know with certainty what the outcome will be. This needs to be each persons individual choice. Since my diagnosis in 2004 and my return to a state of very good health, having an excellent quality of life all the way through.... I have had a good number of people come to me when they were first diagnosed with various cancers asking for my opinion on what they should do. Never have I tried to lead them one way or another. I have only offered my story, given them information to research regarding diet, supplements, alternative treatments and then told them how important it was for them to make their own informed decisions and take whatever treatment path they had the most confidence in. Many chose traditional, some integrative, some complementary and some strictly alternative.

Tonight I was at a neighbourhood coffee shop and ran into an acquaintance who had been diagnosed a year ago with advanced lung cancer. He had been a heavy smoking truck driver all his life. He had come to talk to me when he was first diagnosed because he'd heard through the grapevine of my success using alternatives. At the end of our discussion he told me there was no way he could ever put his faith in what I had done for my cancer treatment and so I told him then he needed to follow the path that he had the most confidence in and so he followed the advice of his doctors and took chemo and radiation. Last year his doctors had told him they would treat him but they did not hold out much hope for him because of the involvement in both lungs. Tonight he told me his latest scan showed no evidence of disease. Wahoo! He made the choice that his "instinct" and research told him was right for him and it worked. How horrible I would have felt had I tried to influence him to do otherwise and he had not survived!

Thanks for filling me in on your experience. It gives me a better understanding of the stand you take.

Best regards
Sheila

[ChemoMan]

Hi Sheila

Just to let you know my experience with R CHOP and DLBCL is by no means unique, it is in fact the norm. A quick read of others stories on the lymphoma board will show that.

Success rates with ABVD and HL are even better, although the results are not as dramatic.

Cheers

[nomorelymphoma]

Hi Chemoman,

I hope that your miraculous recovery persists until you have lived a long and wonderful life. Unfortunately for some of us it isn't that simple. My husband had the same type of experience 2 years ago with DLBCL. After first cycle, AMAZING results...finished the full course of treatment with a clean bill of health. We were elated!! ..... for about 4 months....then it returned with a vengance and the news that the R-CHOP had damaged his heart . Ejection fraction down to 28% which greatly limited future options. Completed 6 cycles of RICE and once again declared cancer free... for only 2 months this time. By the time the third round of DLBCL was diagnosed and staged he was in such bad shape the doctor didn't want to treat and sent him home to die. We insisted they try something, so he did R-gemox. The first round was miraculous on the tumor in his throat, but had no effect on the one in his abdomen which is currently threatening all his major organs, with SERIOUS side effects of the R-gemox complicating matters...we haven't been able to do any more chemo for 6 weeks because of it and the tumor has been growing unchecked. On the other hand there are MANY studies showing HIGH DOSE IV Vitamin C is highly effective on lymphoma. So much so that they finally restarted LEGITIMATE testing on this treatment in 2007. The studies that say it doesn't work were done using lower doses of ORAL vitamin C... big difference. Right now I'm sitting in a world renown cancer hospital with my husband horribly compromised from the amazing treatments you referenced and he is not cured at all. High Dose Vit.C not only has the proven ability to cure lymphoma, it also has the ability to reverse many of the side effects. You bet we're going to go with the Vit. C. People do still die of Lymphoma in large numbers every year, it is not a given that the "miracle chemo" treatments will work or will even be a permanent fix.

[ChemoMan]

Hi nomorelymphoma

Your husbands story is the fear all of us with Lymphoma have. I do not consider myself cured, merely in remission. This is something I live with. I hope for everyone that lives with Lymphoma and their carers that this treatment really works. If it adds another weapon to the armory then it will benefit people with Lymphoma now and in the future.

Feel free to post your husbands story on the Lymphoma board, I'm sure the readers will appreciate it.