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Hi Miss Maggie

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Miss Maggie,
I finally went yesterday to get my medical records and it seems that my Primary doc and I had another miscommunication lol. After reading through them it seems that I don't have Follicular but Splenic Marginal Zone Lymphoma SMZL. I'm going to take them to my Primary doc right now so she can make a copy and then I'm going to the new clinic and see what happens after that. I did go to the internet and read some info on this type of lymphoma and it seems to be very slow and maybe that's the reason why my doc isn't in a big hurry to treat me. Its weird but I feel more calm now that I now whats going on. Well I'll keep you posted on what happens. Take care of yourself and sending you a huge hug.

Sincerely,
Liz

allmost60's picture
allmost60
Posts: 3154
Joined: Jul 2010

Hi Liz,
I'm so glad you are finally getting correct information and the exact diagnosis of what sub type you have. I hope when you go to the new clinic "ALL" of questions will finally be addressed. It's so hard to wait and wonder and then on top of it all to be misdiagnosed. I'm so sorry you have had to go through all of this. Let us know what you find out from your new clinic. Hang in there... Love...Sue (FNHL-2-3a-6/10)

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Sue,
How are you? Well finally everything is clearing up. I'm going to see the other oncologist tomorrow very early, and I'm going to ask him to please explain everything even if he thinks that I don't understand something, (that's why we have Google lol). I also feel very at ease, I feel calm (I hadn't felt like this since this whole ordeal started). Even if he tells me to watch and wait that will be fine too, I just want for the new onc to talk to me and tell me everything that's going on. Well, I'll keep you posted and sending you a huge, warm hug from TX. Take care sweetie.

Sincerely,
Liz

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

Liz,
Like Maggie and Sue I am glad you got the right diagnoses. Now its forward on from here. I know the watch and wait thing is no fun either. It makes me wonder how many people have the slow growing type out there and never know it. The only way it is found is thru a scan and thats usually for some other proceedure. I did read awhile back when I used to check all those websites that only 1/2 of the cases are ever discovered because there is no reason to be giving people scans if there are no symtoms.How they know the percentage I do not know. Maybe with that new drug Sue has posted will be an answer to put an end to this stuff. I really feel a cure is out there already for several types and they are just holding them back. Theres just too much money to be made with treatments right now.It's sad but I have to be careful and not say too much or I will be reported as being offensive. Take care. John(FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3154
Joined: Jul 2010

Hi Liz,
I am doing fine, and thanks for asking. My achey knees and left hip give me the most problem, but so far my heating pad and the occassional light pain med keeps things in check. I've been taking 1,000 units of D3..(4 weeks now) and "think" I knowtice a little difference in my energy..not much, but a little. I think I might start a B-complex and see if that will help. I'm not a pill popper of any kind, so I hate to get started taking a fistful of supplements everyday...ya know? I went 60 years with a ton of energy never taking any vitamins, but I suppose now having cancer will require a little boost other than just eating right...sigh..ha! I have 2 very good friend that lives in Grapeland Texas....have you heard of it? It's a tiny town and if you blink, you'd miss it...ha! You take care Liz and keep us posted. I'm so impressed with your good attitude, sweet personality, and caring supportive words for everyone. I bet your a fantastic mom and wife. (:
Much love to you....Sue (FNHL-2-3A-6/10)

miss maggie
Posts: 929
Joined: Mar 2010

Dear Sue,

First let me comment on John's post. He is so correct when he said our DX is sometimes
found when another health issue comes up. I was feeling great in Sept 2009. My club was
closing, and I was looking forward to the last day on Sunday. Saturday night I had the
worst pain. My small bowel perforated caused by NHL. Gee whiz John, I hope you're incorrect
as far as finding a cure for cancer? Sometimes I wonder like you.

Sue, good for you taking vitamin D3 1000 mg. I think, I just think the vitamins I take is OK?
My oncologist seems fine with it. I take 1000 mg vitamin D3, 1200 mg fish oil, 500 mg chewable
vitamin C, and a multi vitamin daily. I always had low iron. Therefore, I take iron 65 mg 3 times a week. I do have lots of energy. But, I never had chemo and radiation. Only Rituxan.

There was a news report about Vitamin B6, and iron supplements. There was a warning about
these supplements. I used to take 65 mg iron daily. I cut it back to 3 times a week only.
I am only mentioning this because you might take B Complex. There might be enought B6 in
a multi vitamin.

Sue, so glad you are regaining some of your vigor. Lots of Love to you. Maggie

miss maggie
Posts: 929
Joined: Mar 2010

Dear Liz,

I am so glad you finally got your records. Your primary doctor sounds amazing.
They say ignorance is bliss. You and I know that's not true.

I wish you good luck with your new oncologist. Now that you will be asking so many
questions about your DX. It might be overwelming for you to absorb all the info. Is
it possible someone can go with you? I know for my first 2 oncologist visits, I had
someone with me. You would be surprised how much info just isn't picked up by you from
your new doctor.

I will be thinking of you and saying a prayer on your behalf. You too take care
of yourself. Biggest hug your way.

Love maggie

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Thank you for all your prayers and positive thoughts! Just came back from the new onc. and he just needs to review all of my ct scans and bone marrow results and will give me his treatment options. I'm very excited about this new onc, he asked me a lot of questions and he answered a lot mine too. He said that my type of cancer is the easiest to treat and if he confirms what he is thinking he'll just give me rituxan and if everything goes well thats all I would be needing. Whew I can breath now, Thank God.
Sue, I also live in a small town called El Paso, and I think if you blink you would probably miss it too except for the mountains but its growing, I don't know if thats good or not. I'm glad that so far your doing good Sue, and the achy joints will ease up once spring comes around. John sorry to hear you were reported as being ofensive...I read your comments often and I just don't recall reading anything bad :(
Miss Maggie thank you for praying for me, I have a lot of faith in God and I know everything is going to be fine.
I have learned so much from all of you and from others in this site, that I'm just grateful that I have friends here that will be there to help me. Thank God for this site!

Sincerely,
Liz

allmost60's picture
allmost60
Posts: 3154
Joined: Jul 2010

Hi Liz,
So glad you had a good meeting with your new oncologist. If he should decide to put you on Rituxan, you will have alot of first hand support within the group. I can think of 6 or more of us doing the Riuxan as we speak. It's 100% doable and beats the heck out of having to do other harsh chemo cocktails. Sure feels good when we get our questions answered and have a good plan layed out to beat this cancer back. Let us know when and what your onc decides to do as far as treatment goes. You take care sweet Liz and know we are always here for you, as you are for us. We have a good family here! Much love...Sue (FNHL-2-3A-6/10)
(snowing like the dickins here on top of all the snow we got yesterday)!!! UGH!..ha!

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

Liz,
That would be so nice if all you need is the R. As Sue said it is very doable. They have to put it in a little slow at first to make sure you do not have any reaction.I know they ask me if I feel any burning in my throat while it is going in to let them know. As a matter of fact I did feel the burning my first time and they had to slow it down a little. I did notice after the first day I was still a little less energetic for a couple of weeks. Of course thats me. You will be tired on your day of infusion because they give you benedryl. That will zap you a little. You will do just fine with it though. It is rare from what I have been told that anyone has a reaction. John
As far as being offensive I have been known to make comments on the site in the past about what my own thoughts are about what we are all going thru. It's only things that are true but somebody feels my opinions should be kept to myself. I get reported as being offension and my post is pulled. It has happened a few times so now I try to keep my opinions to myself..... as much as I can anyway.LOL

tall floridian's picture
tall floridian
Posts: 86
Joined: Dec 2011

Do I ever remember the small town of El Paso, TX. Was stationed at Fort Bliss in the 60's and still remember the huge rattlesnakes, scorpions,and terrachalas. I'm so glad you're doing well - I am also after 6 rounds of chemo and one month of maintenance. Six months ago I was wheelchair bound and with little hope for the future. Today I can walk without my walker and get around real well. Last week I had a bone marrow test and will hear the results this week. Lots of prayers from church members and friends, eating good healthy food and following my doctors direction has brought me to this point.I too have much faith in God and trust Him through this whole ordeal. Knowing this gives me so much strength - I can face anything life throws at me knowing that as a Christian I am in a win-win situation- either I die from the cancer and receive a new heavenly body in heaven or am healed here on earth for a few more years (I'm 70 years old now) May God bless and heal you as you trust Him and follow Him. Hugsssssssssssss - Steve

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Steve,
I'm glad that you're doing a whole lot better, we just have to put our lives in the hands of our lord and let him guide us (that's what I did). El Paso has grown a lot but compared to other cities its still relatively small. I have an appointment with my new doc next week and he'll decide what way his gonna go! At least his trying to do something...Well take care of yourself and God bless you!

Sincerely,
Liz

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