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chemo treatment

chemo treatment

Posted by Linkfy on Nov 17, 2013 9:28 pm

I'd like to know if anyone out there has information on chemo treatments for NHL. the cancer is in my bone marrow. No swollen lymph nodes or tumors. Had my spleen removed two years ago. My next checkup (testing) is in Jan.2014 (checkups every 3 mo. now). I'm likely to need chemo and am wondering what to expect. I haven't been given a clear picture on the frequency or type of treatment. can anybody help?        linkfy

RE: chemo treatment

Posted by Monise on Nov 18, 2013 9:53 pm

Hi Linkfy,
I know it is hard to wait and as well, information about specific treatments for indolent NHL are vague.   As I understand it, they won't know until right before chemo exactly what the treatments will be.  Cancer treatment is pretty much an individual thing. So it would be based on what the tests find and your general health.. You can ask for more information in January, or even from your family doctor now,...like did they find any specific markers (CD things). You can ask for someone to review your file at your cancer centre and discuss it with you. Some chemo is by oral medication and some is by intravenous. I know how you must feel and I know how hard it is not knowing.  I wish there was more information out there. I understand that chemo can help to get rid of the fatigue caused by NHL.   Best wishes for a successful treatment program!!
They are watching my spleen right now...can you tell me how it feels to have a spleen removed and afterwards how it has affected you?

RE: chemo treatment

Posted by Linkfy on Nov 20, 2013 6:15 pm

Hi Monise : Thanks so much for your reply. I'm one of those people who wants to know precisely  what's going on before I commit. Anyhow the information you provided will help.
As far as the spleen goes I wish I would have been better informed going into that. It was kind of a rushed deal and I was fortunate to get the surgery as soon as I did (3 wks after they confirmed it needed to come out). Although it was very large (loaf of bread, I'm also large) they assured me they could take it out laparoscopically . This was not to be as I was cut from the lowest rib to my hip. That said recovery time was about three months before I felt at all comfortable and 6 mo before I could put in a half days work (physical work). I don't like taking pain meds but for the first 2 mo it was absolutely necessary and when I was done the pain meds nothing helped with the nerve pain. Very sharp pain usually after I would eat. It will be two years in Feb since I had it out and I'm still numb and my abdomen is very sensitive. I hope that helps, and if the can do it laparoscopically the recovery time is much less. Better days to come.

RE: chemo treatment

Posted by Monise on Nov 20, 2013 6:32 pm

Thanks for the tip Linkfy. I have twisted my back/ribs there before and it was not pleasant, so I can imagine from other surgery I have had, how painful that would be. Nerve pain is the worst. Some people say that after chemo they have felt much better all over...just getting through it is hard. One person I know gets chemo only every two weeks over 6 months to a year, one person is taking oral meds and one person who had breast cancer had to go for treatment 5 days a week for 4 weeks so it is hard to guess....I hope you get the treatment that suits you best...best as it can be. Monise

RE: chemo treatment

Posted by Lyla on Nov 26, 2013 6:06 pm

Do you know exactly what type of NH Lymphoma you have? NHL has dozens of sub categories so if you know you have "_____ Lymphoma" you could search on "Chemotherapy for _____" Ex. Splenic Marginal Zone for example. I was told that they treat Lymphoma when there are symptoms and that docs wait to treat until it is really needed so they have more options if things get worse in future. Why go through side effects of treatment if you don't really need it; If you need treatment you will get it, and if it can wait, you wait..   Chemo wasn't as bad as I thought.  Maybe you could ask your doc next time what kind of chemo they are thinking of and then you can read up on it.  If your local cancer centre has a chemo info session, that is handy. I couldn't go to mine and then had a lot of questions later about what to do, not do during treatment. There are too many types of chemo that are possible with NHL and M. was right that treatment is based on your individual profile. Wonder if doc will want a recent sample before prescribing chemo because they want to know what the cancer is sensitive to so that they can consider a targeted therapy (like an antibody).   Have you thought of asking CCS for someone to talk to who went through something similar?  It is very hard to wait and wonder.  You might be given info sheets on the individual drug(s) you will receive if treatment is to start.  I've read mine over and over. In the meantime, would it help to consider that you don't have to worry about chemo side effects over the holidays?  If fatigue is really bad, have you had a CBC to make sure that there isn't anything (simple) that can be done in the meantime?  Sometimes a prescription can help. All the best!  There is info online about the chemo protocols for Lymphomas (a long list), but without knowing what exactly what type and stage and grade you have and what treatment is being prescribed, it would be too many possibilities to read through and probably cause more worry.   With my type: 1 full day of chemo every 3 weeks with over a week of feeling really yucky during that time.  6 months of cycles--but that was with advanced and indolent.  If I wasn't as advanced, it would have been only 1 med and only 4 months of cycles.  And my chemo is working!  We expect remission!

RE: chemo treatment

Posted by Monise on Nov 26, 2013 6:13 pm

Yes, way to go Lyla!!! Really good info and glad to know you are doing good. Let us know how you are doing after treatment...you have cheered us up and given us hope.:)

RE: chemo treatment

Posted by Lyla on Nov 26, 2013 7:05 pm

I am thankful for the encouragement. I was originally given "months" to live and I expect to be in remission based on my last physical exam. I see my doc in December after a CT so I will find out. Chemo hasn't been fun, but if it worked and I have more time than "months", it will have been worth it. I talked to 2 people with my type of NHL and one is celebrating over 20 years survival and one no recurrences for 10 years. Have hope!  I don't believe in having to stay positive and optimistic all the time.  Letting the feelings out gave me the energy to keep going. Those 'breakdowns' were healing rather than being so stressed trying to keep all the worries and fears to myself.  None of us is guaranteed tomorrow (cancer or not) so I am grateful for the little things. Loved the movie "About Time". Thought provoking!

RE: chemo treatment

Posted by Monise on Nov 26, 2013 7:11 pm

This post is great, I can not wait to show my husband. Best wishes again.

RE: chemo treatment

Posted by Lyla on Dec 6, 2013 12:14 pm

My mind is more clear after ending chemo and some of the side effects....I should have said initially that treatment for NHL seems to be over several months. Treatment is in general a few hours on one day followed by a rest period that could be hours, days or weeks . You do get to have a life in-between. One thing I read lately that seemed very helpful was that stages of NHL are different than other cancers: people are often diagnosed late at stage III or IV.  There are still good outcomes when it might sound awful at the beginning.  I think that a big part of the battle is mental so it is important to have supports and find places to vent. Keep us posted......

RE: chemo treatment

Posted by Monise on Dec 6, 2013 12:20 pm

Thanks for the post Lula. What do you take for the monoclonal antibody? Do you take it all the time. Monise

RE: chemo treatment

Posted by Lyla on Dec 6, 2013 12:43 pm

@Monise: I'm on Rituximab, a monoclonal antibody that targets the CD20 protein in my cancer cells. I had it on the same day as chemo and then will have it every 3 months for 2 years. I will have to take extra pre-meds so I don't have further reactions. I may have missed one pre-med which might explain why I reacted last time.  I think Rituximab is the medicine that makes me feel like I have the flu every time.

RE: chemo treatment

Posted by Monise on Dec 6, 2013 12:50 pm

Thanks Lyla. I hear that taking Rituximab makes all the difference to beating the cancer. I know a couple of people taking it. Cheers Monise

RE: chemo treatment

Posted by Linkfy on Dec 23, 2013 9:47 pm

Hi Lyla : I' not been checking in lately. It's nice to see all the help and feedback. Hi as well to Monise. I know have the low down on type of chemo drugs : looks like prednisone, rituximab injection, vincristine (LCR) and Doxorubicin. All are injection accept Prednisone (pill).
My cancer is "splenic marginal zone" and it is stage 4 (B cell) in my bone marrow. Apparently
 slow growing. My treatment will be every 3 wks for 6 mo and could only last 6 mo. recently had another bone marrow biopsy with CT and Galium to fallow in Jan.
The doc is ready to go before we get the bone marrow back but I'm not. I'm checking into alternatives. full of hope for in remission and thanks again for your help
Linkfy

RE: chemo treatment

Posted by Monise on Dec 23, 2013 10:22 pm

Hi Linkfy,
It sounds like you have a good doctor and he has very specific treatment for you.  I hope you enjoy the upcoming holiday and relax as much as you can. I like to hear that they are planning on using  prednisone as it will prevent some pain. I am not sure what alternatives there could be, but maybe you could ask. I am sure if you have some side effects they will change the dose.  There are some variations or brands of those drugs too.  Also I understand that the order of receiving the drugs is important and I don't quite understand why, but that might answer some of your questions. We are here for you! Our thoughts will always be with you. And just to let you know, we have a lot of bald people in our family and we think hair is a very overrated item. 
Good Luck,
Monise

RE: chemo treatment

Posted by Monise on Mar 6, 2014 7:26 pm

Hi Linkfy,

I have not been posting recently. It seems that while I was not looking my house was deteriorating and we had to have a new sewer line put in. Yuck.

I was at a group yesterday for people with cancer and they are all at different points in their treatments.  My cell phone has not been dinging with any more up dates and I just wanted to check in and see how you are doing?

Take Care
Monise

Re: chemo treatment

Posted by Indigo10 on Aug 2, 2020 9:32 am

Hi I was recently diagnosed with splenic marginal zone lymphoma. My spleen is massive and my bone marrow results Is involved. I feel pretty well most days but my hematologists have recommended that I start chemo in a few weeks. I will be given a dose of Rituximab and a half dose of Bendamustine once a month for six months. Has anyone had experience with this combination