Stage 4 lymthoma and already out of remission since Feb

I found out i had stage 4 Lymphoma in October of last year. Did 6 rounds of Chemo and told i was in remission. I had new scans and it showed up under left arm. I lost my Oncologist a few weeks ago and started a new one that i feel is not agressive at all. She wants to wait 6 more months and watch the left arm. I left her and start a new head of Onoclogist this week. Does anyone take a pill everyday to stay to remission, and anyone had a bone transplant? I wondered how bad that is. I plan on living more for awhile so i need to be agressive and i need a Doctor to be agressive. 6 months of remission is not good enough.

Hi,

I was in remission for about 6 months after RChop chemotherapy. So then I started RICE chemo, and eventually had a stem cell transplant. They used my own stem cells which is easier on the patient than a donor transplant. I was in remission when I had the stem cell transplant, and as of July 12th I still was.
Of course, that could change at any time. I will have another CAT Scan in mid-October and we hope all will be well.

Do you live near any University (teaching) hospitals? That usually is the best option for picking a hospital.

I’m in Nothern PA…I go to the Guthrie Clinic. Rochester NY is close enough about 2 hours and Philladelpha PA about 4 hours and cleveland clinic is about 5 hours away. I see you joined in Sept. When were you diagnosed? I see a new Oncologist Thursday and hoping to have a lot of stuff to ask about.

Tammy,

I was diagnosed in January of 2009. I didn't hesitate to go to Loyola University Medical Center because it is the closest teaching hospital to my house, and my husband had two kidney transplants there. They were also one of the top hospitals for bone/stem cell transplants.

What kind of lymphoma do you have? Have you started any chemo or radiation yet.

Keep us posted.

Bobbie

Tammy,

I'm sorry, I just re-read your first email and realized you already answered some of my questions. I apologize for that.

Like I said before, if you are happy and comfortable where you are going, by all means stay with it. If not, seek other opinions. Just remember, being 2 hours away from your hospital may not be in your best interests. If you have a transplant, you may have to stay in a hotel during the recovery period. Some hospitals have rooms set aside at hotels for that purpose.

Bobbie

Bobbie, Right now i am flustrated. I wont know untill i meet the new oncologist if i feel any more comfortable. The Guthrie clinic is a teaching hospital but not for cancer. They are just expanding it to a large Cancer center and thats why all the new Oncologist are coming in.I felt very secure with my old one and then he left. some may have called him arrogant, but to me, and from what ive heard all his patients, he was great to us. He was confiedent, kind, aggressive. I need that. I have a great husband but he is not living with reality of what may be. He cant talk about it so i need this to express things and i so appreciate your input. I know hes scared, but he keeps saying it will all be fine...Hope he's right. I went through Chemo really well, never got sick, my hair thinned but not bad because i have thick hair. MY Chemo was COPR I had 6 rounds and was in remission. No radiation yet. When my cancer came back under my left arm, my temporary Oncologist said to wait 6 more months for the new scans to do anyhting. Thats why she was temp. I feel they can do radiation or remove it for another biopsy. It came back too soon.
Tammy

I wouldn't be comfortable waiting 6 months for another scan. But that's me.

See your new oncologist and go from there. When is your appointment?

Good luck, and please keep me posted. We are all in this together.

Bobbie

Thanks...my appt i Thursday on my 50th birthday..Hows that for birthday. I will let you know how the new one is. Another thing I would want to ask anyone is do any of you have an internal quiver especially during rest. I started that about the time i finished Chemo. Ended up in the hospital and the brain scan showed inflamation around the hypothalmus gland in the brain(not sure of the spelling of that)I've seen several doctors, and no one can figure it out. Think it may be from chemo, ubt not sure . This glad controls your body temp...which mine is really weird. I range from 96.0 to 98.0. Never had a problem untill March. It makes it ahrd to sleep during this internal shaking. I feel its a lot of guessing. They did a spinal tap and shoes a few many white cells, but nothing else. They dont believe its brain cancer.. I wondered if anyone else experienced this after chemo.

I was in a short remission for several months following chemo, but a routine PET scan unexpectedly showed active cancer cell activity, setting off all sorts of alarm bells. I had a quick biopsy that seemed to show there was nothing alarming going on. But following that, I started to sport swollen lymph nodes in my neck and went through another biopsy which confirmed there was active cancer activity. I started radiation therapy about two months later and just finished it last week. The interval was consumed with consults with Fox Chas cancer experts in Philadelphia and discussions with my primary oncologist with a course of action to follow and a radiation oncologist. Cancer Center oncologists also reviewed the case to make thheir recommendations. The best alternative at that time seemed to be four weeks of radiation therapy. I have been fortunate to have access to a great Cancer Center which is aligned with a cancer hospital and experimental lab.
I don't think I would wait six months for observation. In my case, the cancer seemed pretty aggressive and even with fairly rapid action, it was still a several month waiting game. If you wait six months, you'll need to tack on another two months at least for scheduling a biopsy, getting it, waiting for results and undergoing still more CT and PET scans.
It sounds like you have taken control pretty well of your medical care. In a lot of ways you need to be your own advocate and stay on top of things. I have had terrific patient advocates in my care all the way through. At times it was almost annoying seeing a series of doctors practically every time I turned around; at the same time, my oncologist says he doesn't want to get the cancer under control and then discover that something serious had been missed in other quarters.
Hang in there.

Thanks, Thats what i thought. I dont need to have a bigger problem in 6 months. I get pretty tired of all the changes in doctors and different info. I am a pretty strong woman but there are times i feel helpless. I am the type that wants everything done yesterday. I have no patients. 6 months would be horrrible. I hope i can insist on them doing something when i go Thursday to the new Oncologist. I dont want to be too agressive, but we are talking about my life. Thanks for the feedback. Good luck and keep in touch.

Tammy

It seems like forever that i have looked at this site. I have had another 4 treatments of retuxin in Dec. and having new scans in Feb. or March. I finally decided to go on vacation. I have been afraid to leave the country due to my illness. Its hard not to worry when i still dont feel great. I did have 1 lymphnode under my arm that returned in my August scans. In my previous post i ask if anyone had any internal shakes after Chemo. I am hoping that it is not due to the Lymphoma spreading to my brain. I had an inflamation show up on a brain scan and a spinal tap that had a few too many white cells. They have been batteling this for 10 months. Finally i may have an answer. They believe i have a disc in my upper neck putting pressure on my spinal cord. They wont be sure for a week or so, but a much better answer that Lymphoma in the brain.

Hi Tammy, I would like to know what kind of lymphoma you have (type, stage, etc...) if you don't mind. I understand your need to be aggressive with the beast but sometimes the best thing you can do is be patient.

For example, my lymphoma came back last May. Since then, I have been very closely monitored by my oncologist but have had no treatment. The reason for this is that I have an indolent or slow growing type of lymphoma. So, there is no real risk in watching and waiting until the cancer advances to the point that treatment is needed. One of the reasons that this strategy is valid is that, with the indolent lymphomas, although they react very well to treatment they also almost always come back later. So, the idea is to use chemo and other options carefully as they are all toxic to one degree or another and you can't use them forever. In other words, I am trying to stay alive by not using all of my treatment options up and then have nothing to fight it off with later.

Of course, if you have an aggressive lymphoma everything I just wrote goes out the window. With the aggressive ones you do need to hit it hard with everything at your disposal. If you do that, you actually have a good shot at a cure. The indolent forms are incurable at this time.

I also plan on living as long as God gives me, Tammy. In order to do so, it really is critical that I know what kind of lymphoma I have and what the appropriate strategies are for dealing with it. One of the best sources for information I have found is at this site: http://www.nhlcyberfamily.org/types.htm

If you haven't seen it I hope it proves of some use to you. Good luck with your choices and with your treatment. I wish you well.

Good health,

kermica

stage 4 B cell Lymphoma. So far just using the Retuxin for maintence. I did 6 rounds Chemo and was in remission untill August. The 1 lymphnode under my arm right now is jsut watch and see. It is a slow growing kind.. Cant remember if it was a grade 1 or a 3 but the best one to have. I also plan on lving life too. I had put off vacation i was worried. But now I'm going no matter what. I need one.

If its the best one to have then its Grade 1, for sure. Sounds like an indolent lymphoma like the follicular I have (which is one of the many different B cell forms). There are a few other slow growers but follicular is by far the most common of those types. I have an involved node under my right arm for the last 8 months...go back in March for my next scan. This is when scanxiety sets in and I become more convinced that there will be more involved nodes on the scan. So far, I have been wrong twice so I just do my best to clamp down on the anxiety and live a normal life. It seems to work for me so I will keep doing things this way as long as the docs sign off each time.

Good luck with things and enjoy your vacation!

kermica

I know. I too feel the same way. I go back thinking here we go, but the scans still only show the left arm pit. Thats wehn i decided to go on vacation and it better not show anything till I go or I’m gonna be mad!!!I am waiting till i get back to do anything for treatment.

Hi Tammy

Go and enjoy your holiday and everything that Kermica has been saying is about right from my understanding. Even if you have slow growing nodule they wont do anything and like Kermica, I have come to understand that no action can be the best action.

I am planning on running the New York Marathon in November this year, so when I have finished my treatment in April, there is no way that that are going to be nodules that are going to give me trouble - this is simply not going to happen!

Enjoy and try to feel normal.

Dina

WOW good for you. I had 2 of my grandsons for the weekend and boy do they make you feel alive. Beautiful boys and busy boys. I have never taken time off work and kept going 100%, But i had this frear of leaving the country. I knew in myhead it was stupid, but couldnt stop it. Finaly before Christmas i booked a vacation.
Good luck on your marathon…I am in awe.

Tammy

Does anyone know what happened to Tammi Brown from these posts? Is she still ok? Really wish I could talk with her. Anyone know what happened to her as I have alot of the same things that she went thru.

Chrissy I sent her a message to check in.We'll see.