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follicular b cell lymphoma stage 4

1ladydiamond
Posts: 28
Joined: Oct 2012

Hi my name is Patricia i was diagnosed in April of this year with Follicular b cell lymphoma and when i saw my doctor he thought i was just in stage one or two i had to push to get him to do a bone marrow test which proved to be stage 4 to his dismay. He was shocked to say the least i have been taking Rituxan since and now i take it every 8 weeks i will always be in stage 4 he told me but it has scaled back some. They call it remission he said but it is only scaled back but it can be yrs before it comes back to where it was. I am happy. I am still tired and i catch everything under the sun virus's etc. lol After treatment is when i can really catch anything and i have the last two treatments virus's. I am told someone with 4 stage has about 8-10 yrs. So amost a year in April i am not counting the time but i am aware. I live a happy life. And also i am told that I have a 50 percent chance of developing the aggressive b lymphoma which i know in my heart i won't just mind over matter. I was just wondering if i could connect with anyone else that has follicular lymphoma. So we can talk about treatments and new clinical trials that is happening i been abreast on conferences and new research on this. Well thank you for allowing me to post I am a 51 yr old grandmother and would love to meet others with the same/ I started juicing and not eating meat and milk i make soy shakes and use kale and other veggies to juice and drink. I changed my whole way of thinking and eating .

ROF
Posts: 11
Joined: May 2012

I was diagnosed with nodal marginal zone lymphoma in Sept 2011. This is an indolent lymphoma that is similar to Follicular. My case surprised the doctors because I had limited lymph node involvement (probably stage I) but the bone marrow biopsy came back 90% lymphoma. I saw doctors in the town I live in, at Stanford and Sutter of Sacramento. They all told me the same thing. Indolent lymphoma is not curable but highly treatable, and I should consider it a chronic disease like diabetes. Stage IV in NHL is different than Stage IV in other cancers, in my case and in probably yours it only means bone marrow involvement. The 10 year number is a median and does not reflect current treatment options. Stanford has studies that show a median of 16 to 18 years. Anyhow between Sept 11 and May 12 I had transfusions (28 units) since by bone marrow wasn't working and received 10 rounds of R-CHOP (reduced levels for the first rounds). I have had 4 PET scans and the last one showed now sign of lymphoma and I am now on Rituxan maintenance for 2 years. The 50% number you cite also seems higher than what I have read. The Stanford doctors said because of the bone marrow involvement they wanted to hit it hard with R-CHOP to see if they could get a good remission...which is what happened. We aren't in a great situation but I don't think it is as bad as you have been led to believe...and my wife calls me a pessimist!!! The thing I liked about my local oncologist is that he encouraged me to seek other opinions and helped schedule them. I would strongly recommend people get a second opinion.

1ladydiamond
Posts: 28
Joined: Oct 2012
1ladydiamond
Posts: 28
Joined: Oct 2012

Hi thank you so much for responding to me. And for your encouragement. I don't plan on following what i am told for the 8-10yr living part. lol I know i can live Longer i have so much to live for. I am a optimistic and see a glass half full then half empty. My doctor knows his stuff but he is arrogant and he presumes to know my body better than i. But he is great but that attitude stops him from being a amazing doctor. I asked many questions and he answered exactly what i read. But your right amazing feats are happening and i read up on them and the conferences and i am looking into Cancer treatments of America he tells me i will never be out of stage 4 but i disagree i believe i can be if i just eat right believe and research. I am sorry you are going through this terrible thing. But you are alive and i will keep you in my prayers. my doctor never encouraged me to research in fact he told me to just stop reading and researching because he said it will make me crazy so many things out on the net. But of course i don't listen lol. I read about this amazing new discovery
Soursop
From Wikipedia, the free encyclopedia
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For the herbaceous plant, see Oxalis pes-caprae.
Fruit and leaves of Annona muricata

Soursop is the fruit of Annona muricata, a broadleaf, flowering, evergreen tree native to Mexico, Cuba, Central America, the Caribbean and northern South America: Colombia, Brazil, Peru, and Venezuela. Soursop is also produced in sub-Saharan African countries that lie within the tropics. Today, it is also grown in some areas of Southeast Asia, as well as in some Pacific islands. It was most likely brought from Mexico to the Philippines by way of the Manila-Acapulco Galleon trade.[citation needed] It is in the same genus as the chirimoya and the same family as the pawpaw.
Soursop fruit

The soursop is adapted to areas of high humidity and relatively warm winters; temperatures below 5 °C (41 °F) will cause damage to leaves and small branches, and temperatures below 3 °C (37 °F) can be fatal. The fruit becomes dry and is no longer good for concentrate.
Annona muricata var.subonica

Other common names include: guanábana (Spanish), graviola (Portuguese), corossol (French), sorsaka (Papiamento), adunu (Acholi), Brazilian pawpaw, guyabano, guanavana, toge-banreisi, durian benggala, nangka blanda, sirsak, zuurzak and nangka londa.[1] In Malayalam, it is called mullaatha, literally thorny custard apple. The other lesser-known Indian names are shul-ram-fal and hanuman fal. In the Ga language of Ghana, it is called aluguntugui.

The flavour has been described as a combination of strawberry and pineapple, with sour citrus flavour notes contrasting with an underlying creamy flavour reminiscent of coconut or banana.
Contents

1 Cultivation and uses
2 Health
3 See also
4 References
5 External links

Cultivation and uses

The plant is grown as a commercial crop for its 20–30 cm (7.9–12 in) long, prickly, green fruit, which can have a mass of up to 2.5 kg (5.5 lb).

Away from its native area, some limited production occurs as far north as southern Florida within USDA Zone 10; however, these are mostly garden plantings for local consumption. It is also grown in parts of Southeast Asia and abundant on the Island of Mauritius. The soursop will reportedly fruit as a container specimen, even in temperate climates, if protected from cool temperatures.[citation needed]
A. muricata flower

The flesh of the fruit consists of an edible, white pulp, some fiber, and a core of indigestible, black seeds. The species is the only member of its genus suitable for processing and preservation.[citation needed] The sweet pulp is used to make juice, as well as candies, sorbets, and ice cream flavorings.

In Mexico and Colombia, it is a common fruit, often used for dessert as the only ingredient, or as an agua fresca beverage; in Colombia, it is a fruit for juices, mixed with milk. Ice cream and fruit bars made of soursop are also very popular. The seeds are normally left in the preparation, and removed while consuming.

In Indonesia, dodol sirsak, a sweetmeat, is made by boiling soursop pulp in water and adding sugar until the mixture hardens. Soursop is also a common ingredient for making fresh fruit juices that are sold by street food vendors. In the Philippines, it is called guyabano, obviously derived from the Spanish guanabana, and is eaten ripe, or used to make juices, smoothies, or ice cream. Sometimes, they use the leaf in tenderizing meat. In Vietnam, this fruit is called mãng cầu Xiêm in the south, or mãng cầu in the north, and is used to make smoothies, or eaten as is. In Cambodia, this fruit is called tearb barung, literally "western custard-apple fruit." In Malaysia, it is known in Malay as durian belanda and in East Malaysia, specifically among the Dusun people of Sabah, it is locally known as lampun. Popularly, it is eaten raw when it ripens. Usually the fruits are taken from the tree when they mature and left to ripen in a dark corner, whereby they will be eaten when they are fully ripe. It has a white flower with a very pleasing scent, especially in the morning. While for people in Brunei Darussalam this fruit is popularly known as "Durian Salat", widely available and easily planted.
Health

Nutritionally, the fruit is high in carbohydrates, particularly fructose.[citation needed] The fruit also contains significant amounts of vitamin C, vitamin B1, and vitamin B2.[citation needed] The fruit, seeds, and leaves have a number of herbal medicinal uses among indigenous peoples of regions where the plant is common.[citation needed]

There is evidence indicating that the fruit's extracts selectively inhibit the growth of human breast cancer cells by downregulating expression of epidermal growth factor receptor (EGFR) in vitro and in a mouse model,[2] but the effect has not been studied in humans.

Research carried out in the Caribbean has suggested a connection between consumption of soursop and atypical forms of Parkinson's disease due to the very high concentration of annonacin.[3][4][5][6]

According to Cancer Research UK, Annona muricata is an active principle in an unlicensed herbal remedy marketed under the brand name Triamazon.[7] Triamazon is not licensed for medicinal use and the sale of the product resulted in a conviction on four counts of selling unlicensed medical products, and other charges, for a vendor in the United Kingdom. also i read more about the effect it has on alot of cancers wow wishing you a blessed day thank you again
Sincerely
Patricia

1ladydiamond
Posts: 28
Joined: Oct 2012

Thank you all for your encouragement I wish you all the best. Thank you for allowing me to post on this site and asking questions.

1ladydiamond
Posts: 28
Joined: Oct 2012

I went from taking weekly treatments to monthly in July and now Oct is every 8wks still in stage 4 they tell me. I would love to hear more about What anyone is going through i receive steroids a massive amount i am on a emotional roller coaster after treatment. I get angry and then break down and cry then angry again it is crazy that last for a week after treatment it is crazy. But it all settles down after a week. I am getting a flu shot this week. Doctor says it will help me since my immune system is weak.
Thank you all for you input please i want to hear from you any advice or your experiences.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I do not think there is anything I can add to what ROF has said. I have Follicular stage 4 and and currently in remission for 2 years now. John

Michael K
Posts: 1
Joined: Oct 2012

Hello Patricia

Hi my name is Michael I was diagnosed in october of 2001 with Follicular b cell lymphoma stage 4 with tumers in my chest, stomach and spots in my liver. I was scared to death, but I am still here and can walk you through most of any thoughts or sensations that are related to chop, prednisone and rituxib. The chemo was very hard on me and it took me almost 5 years to feel like a human again. Always anxietys and nerve issues LIKE SENSATIONS I called chop bites. I honestly believe the rituxab has helped me stay in remission this long, and do I ever know what you mean when you say you changed your way of thinking and eating. I was 43 when I was diagnosed and am 54 now, very active, I do a little farm work and cut a little wood just to stay active, I try to eat healthy. I am a very poor typer and am very slow at it, but I still look at the web for new discovery's in the NHL Follicular B Cell field. If you would like to chat, that would be great. Just wanted to let you know it may be possible to be here for more than 10 years. I went through all of the prognosis charts and life excpectancy charts for the first 6 years, 20 years could be on the horizon, I am optimistic. Hope to hear from you soon. Michael K

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Michael,
Welcome to the site and that is what we like to hear.There used to be a lady on here that has since taken a break named Bluerose that has passed her 25 year mark. I am sure she gets on once in a while. She is a great inspiration for all of us. John

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