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Loaded with questions.

Boo3265
Posts: 9
Joined: Sep 2013

Hi everyone,
I have just recently joined this forum and many of the comments I have seen here are quite helpful. I am not a patient but am the daughter of one. My father has been diagnosed with CNS Lymphoma and I being a teenager have absolutely no idea what lies ahead. I have plenty of questions to ask evry piece of information I can get will be very helpful. I'll start with the side effects of chemo, the doctors say that it will be followed by low blood count, fevers, vomiting nausea and what not. 
It is devastating, idk what I should be prepared for as I have my mother to take care of as well. 
Is there anyone who can assist me with this?

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

Boo,

 First of all welcome to the group. Next remember we are all different in the way we react to the chemo and/or radiation. Some get nausea and some don't, some get extremely tired and some do not, etc.,etc. It is an up and down ride for sure, but well worth it in the end. My blood counts stayed about the same, but some members had a dramatic drop. If you fill in the "About me" page it will help others to go and see exactly what you are dealing with. I have follicular and in remission, not cns lymphoma. Others will join in I am sure. John

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1154
Joined: May 2012

Boo,

As John stated, every cancer patient and their experience is different.  Treatment reactions run from "I hardly noticed it" to "I almost died, and was in agony for xxx number of months. "  Most chemo is administered in a clinic as an outpatient, but some drugs can be administered at home.  Probably 90% of these drugs are given via I.V. drip, but a few are in pill form.  A few require hospitalization for administering.  What the doctor listed were the most common, rountine side-effects. You father could have all of those, a few, none at all, or any of a dozen or so less common side-effects that you did not mention. 

Tell us  what SPECIFIC chemo drugs he will receive (Rituxan, CHOP, ICE,. ABVD, etc.), and folks here can give you much more tailored, specific information.  There are currently well over 200 FDA approved chemotherapy drugs, and they can vary dramatically in the effects they present.

max

 

Boo3265
Posts: 9
Joined: Sep 2013

I will get back with the names of the drugs and with more specific details tomorrow as I was with my Father all day for his first round of chemo. I did try to memorise the name but I've forgotten them because I've had quite a hectic day. I do know that he's been given Decadron (steroids) as he initially had TBM for which he was being treated.

The drugs were given through an I.V drip but there were no side effects till now, do they occur a few hours later? I'm not sure if either of you are experienced with a similar case, if so I hope you can help me with such questions. 

Thank you for your replies, means alot. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1154
Joined: May 2012

Boo,

No, side-effects do not happen that rapidly.  The only side-effect that he could feel within a few hours would be possibly nausea, or chills from some meds. Everything else can take days, weeks, or even months to manifest themselves.  Hair loss, for instance, almost always takes two weeks or so to happen, if it is caused by chemo (radiation hair loss can happen faster than that, however).  Many combinations recommend steroids before the other meds begin, to reduce allergic reactions, so the steroid application does not really narrow down too much what he might have received.

Send the drug abbreviations and we will send you some links and a possioble heads-up on the most common side-effects. Bless the both of you.

max

Rocquie's picture
Rocquie
Posts: 503
Joined: Mar 2013

I'm so sorry to hear that your Dad has been diagnosed with CNS Lymphoma. I really admire you for seeking out information and support and also for wanting to take care of your Mother. You are very brave. Your main question is probably, "Will my Dad be OK"? Please know that lymphoma is very treatable and not like other types of cancer.

Yes, there are side-effects of chemo but they can be managed. Medications and blood transfusions can be given for low blood counts. Likewise, there is medication available for nausea and fever. Your Dad will be monitored very closely for these side-effects.

I hope you have someone you can talk to about your feelings. A Guidance Counselor, a family friend, a close relative, a nurse, a minister? Most hospitals have chaplains you can ask to speak with. Talking about it really helps and makes you feel less confused and afraid.

Come here, to the message boards, for any and all questions. These boards don't always move fast, so you may have to wait a few days for answers.

I am going to be thinking about you, and praying for you and your family. And sending my hugs.

Your friend,

Rocquie

 

Boo3265
Posts: 9
Joined: Sep 2013

Thank you so much for your response. 

Yes that is exactly what I wanted to ask but I just couldn't find the right words probably because I am scared.
My fathers chemo started today and I was there for 12 hours, as long as I was there I did not see any side effect, not sure if they occur after a few hours but I hope not.

I really appreciate your reply because that was just what I wanted to hear.
I can't really discuss it all with  my family because I know they are equally worried so I have joined a few forums online and found someone in one of them who has given me her email and she is very helpful in the matter. 

For all the information that I should have provided earlier I will ask the doctors about the regimen and sorry I couldn't make it more specific I am new to this.

Please do pray for us Rocquie, thank you once again you are doing a wonderful job of helping others. I hope it's okay with you if I come back with any further questions? 

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

Boo,

  We understand how difficult it is to remember things like this. Especially when it is something new that you have never heard of before. A soon as you find time to post what types of medications he is getting it will be a lot easier for us to relate to any side effects we may have had. All people are different and their effects are also different, but we can get closer to relating if we know what they are giving him. Just hang in there. John

Rocquie's picture
Rocquie
Posts: 503
Joined: Mar 2013

Boo, you are free to ask me any questions at all. I may not know the answer but I will try to help you find it. And I will always listen with an open heart. You can send private messages with this site and you are welcome to do that too if you would like.

Prayers and (((Hugs)))

Rocquie

 

jimwins's picture
jimwins
Posts: 2065
Joined: Aug 2011

Hi Boo and welcome.   Your father is welcome here as well if he is able and would like to join the "lymphomaniacs" here :).

What I can say is that they have come a very long way in controlling side effects of chemotherapy (like nausea for example).  In general worsening fatigue is common among most treatments.  Also, there are side effects from steroids (prednisone/decadrone) - being "wound up" or "bouncing off the walls", difficulty sleeping (until it wears off), irritibaiity, etc.  and then a "crash" when it wears off.  People's reactions to chemotherapy varies and your father may have no or mild side effects.  Generally speaking, side effects tend to get worse as the patient progresses through more cycles (especially fatigue).  Some side effects will lessen or go away as the patient adjusts to chemo and they tweak the chemo and/or medications to prevent/treat side effects.

For chemotherapy to be effective they have to lower your immune system response (usually with steroids) and this is where the low blood counts could come in.  He has to be very careful about infection during this time which means avoiding sources of infection like sick people/crowds, raw foods, etc.  Often after a round of chemo, a shot is given to boost the immune system (neupogen or neulasta) and this can cause bone aches but there are things that can be done to prevent or lessen these aches.

Depending on the chemo regimen, he may lose his hair.  If this is going to be the case, it may be simpler to just get a buzz cut where he's in control of the hair on his head and it's less traumatic.  You can actually lighten this experience by finding fun headgear to wear like funny hats, "dew rags", etc.  I still have my "alien" picture on my drivers license as I had to renew my license right after I finished chemo and the would not allow me to wear a hat.  That was nearly two years ago and I'm still in remission.  It reminds me of how far I have come and how fortunate I have been.  Besides, I got pulled over once and it was kind of fun watching the look on the police officer's face trying to decide if it was really me ;).  I explained about the chemo and he was very kind about my speeding :).  I kind of have a lead foot sometimes I admit.

Advice I give to new folks here is attitude and humor are free weapons in this war - use them to your advantage - and that applies to you as well. I'm not sure how old you are (13-19 as a "teenager") but this is a difficult journey at any age (for patient or caregiver).  Please know you are not alone and there are unending hugs for you here.  Please tell your father that he and all of you are in our thoughts.

Big hugs from a former alien :),

Jim

 

 

 

Boo3265
Posts: 9
Joined: Sep 2013

Hey guys,

I have been stuffed lately and really confused because the doctors went on and got second and then a third opinion and turns out my dad has Astrocytoma Grade 2.
I spent all my time researching for CNS Lyphoma that I don't have the slightest idea of Astrocytoma.
At first the doctors said it was grade 4 and he has very little time but that was before they prepared a final report. When dad was given chemo therapy for Lymphoma he was given methotrexate and a couple of other drugs, anti depressants (Alprazolam) including the steriod he's been getting for months now that is Decadron. 
Is that a bad thing? That he was given his first round of chemo and now theres a whole different kind of tumor? The dotors seem to be calm though, they say that chemo does treat brain tumors but they are going for radio therapy for astrocytoma now. 
I know you might not be of much help because this is not CNS Lymphoma I'm talking about anymore but if theres anything at all that any of you know please let me know. I don't know what we're dealing with, I didn't get time to look it up on the internet because I'm giving admission tests for a few colleges alongwith everything.
Talking to all of you and reading your posts has really helped me in the past and I've been quite calm seeing the love and concern here in this forum, I really appreciate it. :)

Boo 

jimwins's picture
jimwins
Posts: 2065
Joined: Aug 2011

Hi Boo.  This stuff is confusing for everyone - even other doctors :),  I did some very quick research on astrocytoma grade II and it looks like it is treatable with chemotherapy and possibly radiation as well (apparently slow growing?).  Looks like most cases involve the brain stem from what I read.

Suggestions:

1. Be careful what you read/find on the Internet as it can drive you crazy and often info is outdated depending on the source.

2. Post on the brain cancer board here.  I did a search for astrocytoma and many results were found so odds are you will find folks with a lot of direct experience there. 

Of course you are always welcome here too!  Please keep us updated.

Warm and positive thoughts to you and your family and big hugs of course,

Jim

Boo3265
Posts: 9
Joined: Sep 2013

We are just waiting for the third doctors final opinion and then they will probably start the radiotherapy. Yes I'm aware of that, that is why I came here without searching for it on the internet, most of the information there is outdated, horrifying and it's probably a good idea to ask people who have latest experiences.

I'll join a discussion in the brain cancer board but since I've gotten high hopes from here I wanted to let you guys know first. I'll definitely keep you updated, hope it goes well :)
Do pray for us.

Boo.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1154
Joined: May 2012

Boo,

It's horrible, hearing of what you've been going through with the incorrect diagnosis.  Since the FDA gives  most doctors a great deal of latitude in how chemotherapy drugs are perscribed, I seriously doubt that the Methotrexate or other drugs could have harmed him in any way, and may possibly have been beneficial.  When you read about almost any chemo drug, it lists first what it is usually employed to treat, and then the OTHER things that it is at times used to treat, and the latter list can sometimes include several other cancers.  When Lance Armstrong was given chemo for his testicular cancer, for instance, it was also working on his brain tumor, if I recall correctly.  

www.chemocare.com says the most common chemos for brain tumors is Carmustine or Temodar, which you might want to read about. 

A good friend's daughter (she is 45) was diagnosed with a brain tumor two months ago. Initially, the local teaching hospital was going to just ship her off to Duke University Medical Center, but later realized they have a specialist in-house for exactly what she has.   He did not tell me the exact name of her strain, but I will ask.

What tiny bit I read about Astrocytoma says it is most commonly treated with surgical removal.  I would ask his team about that, but it may be in a spot that is relatively inaccessable. Astrocytoma is also usually grouped as "Narrow" (field) or "Wide" (field), referring to how far the tumor usually spreads.   His score of "2" means that his is a more indolent, or slow-moving, variety, which undoubtedly is to be preferred.

There is a brain cancers site, as you noted.  Please do update us on his progress.  

Also: I looked at your bio submission, and you are apparantly a teenager.  I taught high school history for a year after grad school, and must compliment you on your beautiful writing skills. So precise and devoid of the stupid slang and lingo that today passes as "writing."  You also stated that you are "caring for your mom" !  Not only do you have academic talent, but CHARACTER as well.  You have a huge amount to be proud of.  You will come out of this an extraordinary person.  Actually, I think you already are.

You asked you our prayers. You have mine this day,

max

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