NHL and HIV

anliperez915

Hello everybody;

My name is Liz, I'm 35 a mother of three kids and a wife, I was recently diagnosed with NHL after 20yrs. of being HIV+...My Doc told me to watch and wait to see what my lymphoma does since it is affecting my spleen...he wants to wait since starting chemo can make me weaker and put me more at risks for more infections...my question is - has anybody gone through the same or similar to my situation and if yes what has been your experience???

Thank You in advance...
Sincerely,

Liz

catwink22

Watch & Wait
Hi Liz,
So sorry you're here, but you've come to the right place. Do you know what type of NHL you have and what stage you are at? Have you had a bone marrow biopsy done? There are indolent, slow growing NHL where it is common practice to watch and wait. I have Follicular NHL stage 3 in all my lymph nodes and a spot on my hip. I did watch & wait for about 9 months until the hip spot on my scan was increasing in intensity. I am having treatments with Rituxan only. It is NOT chemo, but has been VERY effective! It's a man made antibody that tells your body to kill the cancer cells (in a nut shell). Everything is gone except one little node under my arm. My onc said I should not need any further treatments for about 20 years (I am 47), BUT I will be closely monitored. This may not be a treatment you can use depending on your type and stage. I would suggest you get more information on all your treatment options and definitely get a second opinion. Hopefully you can watch & wait for a long time, but at least now you have time to do some homework and make your decisions wisely instead of in a dazed panic.
Much luck to you! Let us know how you make out. Take Care!
Cat

anliperez915

catwink22 said:

Watch & Wait
Hi Liz,
So sorry you're here, but you've come to the right place. Do you know what type of NHL you have and what stage you are at? Have you had a bone marrow biopsy done? There are indolent, slow growing NHL where it is common practice to watch and wait. I have Follicular NHL stage 3 in all my lymph nodes and a spot on my hip. I did watch & wait for about 9 months until the hip spot on my scan was increasing in intensity. I am having treatments with Rituxan only. It is NOT chemo, but has been VERY effective! It's a man made antibody that tells your body to kill the cancer cells (in a nut shell). Everything is gone except one little node under my arm. My onc said I should not need any further treatments for about 20 years (I am 47), BUT I will be closely monitored. This may not be a treatment you can use depending on your type and stage. I would suggest you get more information on all your treatment options and definitely get a second opinion. Hopefully you can watch & wait for a long time, but at least now you have time to do some homework and make your decisions wisely instead of in a dazed panic.
Much luck to you! Let us know how you make out. Take Care!
Cat

Thank you Cat...
Thank you Cat for responding...well to tell you the truth the Doc said I was a stage 4 but he didn't really tell me the type but he did say it was slow growing and was mostly in my spleen, he wasn't very clear and I was very nervous so that made me forget some questions I had for him...I'm kind of pissed at myself for not asking more questions...well the next time I see him will be in Dec. but I'm having some pain in my arms and legs...I'm just worried that if I wait it will get worse! How do people get second opinions and do they have to do all the test again? I did have a bone marrow done, MRI, CT scan, and a lot of blood work done...

thank you again and take care!

Liz

dixiegirl

anliperez915 said:

Thank you Cat...
Thank you Cat for responding...well to tell you the truth the Doc said I was a stage 4 but he didn't really tell me the type but he did say it was slow growing and was mostly in my spleen, he wasn't very clear and I was very nervous so that made me forget some questions I had for him...I'm kind of pissed at myself for not asking more questions...well the next time I see him will be in Dec. but I'm having some pain in my arms and legs...I'm just worried that if I wait it will get worse! How do people get second opinions and do they have to do all the test again? I did have a bone marrow done, MRI, CT scan, and a lot of blood work done...

thank you again and take care!

Liz

Liz
Nobody says you have to wait till december if something is bothering you. Call them. Write down your questions and don't be afraid to ask.

I was able to get all my test results and stuff from the hospital where I had them done and took all the information to get my second opinion. I would just call and ask for an appointment for a second opinion. It's very common and any Dr's office should be glad to set you up for one.

Hang in there,
Beth

bluerose

dixiegirl said:

Liz
Nobody says you have to wait till december if something is bothering you. Call them. Write down your questions and don't be afraid to ask.

I was able to get all my test results and stuff from the hospital where I had them done and took all the information to get my second opinion. I would just call and ask for an appointment for a second opinion. It's very common and any Dr's office should be glad to set you up for one.

Hang in there,
Beth

Hey there Liz
Beth is right, you don't have to wait til Dec to get another opinion. Just find another good cancer facility and seek out a good oncologist who specializes in your type of cancer or get a referral from you doctor, you might have to have one anyways. You can do your own research too online for good specialists in your area, like ones who have written a lot of papers for instance or ones who have been in the news about this or that achievement in their field. Regardless, you should get another opinion and I wouldn't wait to do it at stage 4. You can get copies of all your test results if you don't already have them so you can show them to the new doctor, he might want to run some of his own but he will have the basics. By the way you should be asking for duplicates of all your medical records. Good to have.

You mentioned that you forgot to ask questions. You have to write down all of your questions before you go to see any doctor and take the list in with you and just keep the doc tere til all your questions are answered. There is alot of stress relief in getting answers to your questions and that is your right. If the doctor says he doesn't have time then you have to take a stand and say that this is your life and you need to know as much as you can about what is going on etc. Of course say it in a polite way and with all due respect, pissing off your doc doesn't help although many of us would like to now and then. lol.

You have to fight for your own care so take the wheel and get what you need, sooner rather than later.

Keep us posted.

Blessings,

Bluerose

bluerose

dixiegirl said:

Liz
Nobody says you have to wait till december if something is bothering you. Call them. Write down your questions and don't be afraid to ask.

I was able to get all my test results and stuff from the hospital where I had them done and took all the information to get my second opinion. I would just call and ask for an appointment for a second opinion. It's very common and any Dr's office should be glad to set you up for one.

Hang in there,
Beth

Hey there Liz
double post error

catwink22

anliperez915 said:

Thank you Cat...
Thank you Cat for responding...well to tell you the truth the Doc said I was a stage 4 but he didn't really tell me the type but he did say it was slow growing and was mostly in my spleen, he wasn't very clear and I was very nervous so that made me forget some questions I had for him...I'm kind of pissed at myself for not asking more questions...well the next time I see him will be in Dec. but I'm having some pain in my arms and legs...I'm just worried that if I wait it will get worse! How do people get second opinions and do they have to do all the test again? I did have a bone marrow done, MRI, CT scan, and a lot of blood work done...

thank you again and take care!

Liz

Hi Liz
Unfortunately this is a learning process for all of us, trial by fire! So don't beat yourself up if you forget to ask questions. You should be able to call the office with your questions too if you do forget. Is there someone who can go with you to your appointments? There is a lot of information to take in and when you get the news sometimes your mind just freezes. The other person can step in and take down the information for you and ask your questions for you if you forget or sometimes they think of questions that you never even thought to ask. My insurance is very helpful to refer doctors and get information on how to get 2nd opinions, that might be a place to start for another opinion, or contact your Primary or even your GYN for a good ONC. Good Luck Liz! We're here for you! Take Care.
Cat

anliperez915

Thank you, Catwink,
Thank you, Catwink, Bluerose, and Beth...it means a lot to me all of your good advise... I will take it and I'm not going to wait till Dec..hell I have a 3 yr. old I have to take care of!!! Well I'll keep you ladies posted and thanks again...

Sincerely,
Liz

allmost60

Good advice
Hi Liz,
The ladies have all given you great advice. Getting a second opinion will put your mind at ease and what you need now more than ever is less stress in your life and your thinking. Be sure to let us know what you find out. Best wishes and prayers for you.
Love...Sue (FNHL-2-3A-6/10)

boy34

Hi...im in the watch and
Hi...im in the watch and wait treatment...I have follicular non hodgkings lyphoma A stage 3 grade 1.5....aloso with spleen envolvement and its not in my marrow! This is typical to wait and watch...but do get yourself a second opinion...your doc should endorse it if he or she is any good!