Newly Diagnosed And Very Worried

My sister was diagnosed with Mantle Cell Lymphoma about a week ago.  She is going through lots of scans now..pet scan, etc. and is supposed to start chemo in a couple of weeks.  We are very worried because we don't know what to expect.  Will she be extremely ill after the chemo?  Do you lose your hair during the first round?  Will we be able to visit her during her chemo? 

Sharon

On 3/11/2008 sharonj wrote:

My sister was diagnosed with Mantle Cell Lymphoma about a week ago.  She is going through lots of scans now..pet scan, etc. and is supposed to start chemo in a couple of weeks.  We are very worried because we don't know what to expect.  Will she be extremely ill after the chemo?  Do you lose your hair during the first round?  Will we be able to visit her during her chemo? 

 

Sharon

So sorry to hear about your sister, and totally understand the concern, worry and questions - I have been in "that place" just recently-still am!

My husband was diagnosed with Mantle cell lymphoma at the beginning of January this year (2008), following the appearance of enlarged lymph glands under his chin and behind his ears. He has stage IV with bone marrow and digestive tract affected. He was immediately started on chemotherapy- what they call R-CHOP.

 I take a day off work and go with him each time he has chemo and it takes practically all day. He had a little box placed under the skin of his chest and the drugs are passed through this. The first time he had chemo we left the clinic (he receives treatment as an out-patient) floating on air as it had all gone so well....later that evening he did feel pretty bad, he said it was a very strange diffused pain...nothing too drastic and no nausea.

Over the following days he had some good days and some bad, but all in all, bearable. He has now had three chemotherapy sessions - the last time we watched a film on the DVD player in the room, had a picnic and read magazines...just to give an idea of how it is, for us anyway.

Each time he has chemo the reaction is different, but he has not had any nausea and ..is putting on weight! Everyone reacts differently and anything might be expected as side effects - for my husband and I it was really important that we "received" the chemo as something that was helping fight this thing, and to accept it as such.

 He has had some pain in his foot and leg, which they have said may be one of the drugs affecting his nerve system, so they are going to slightly reduce the amount of that particular one. He also has problems with his white blood cell count, and is currently taking injections- Neupogen -that will help boost this so that the next chemo session ( foreseen for next Wednesday 19/3/2008) can be given. This drug can have some side effects too, this seems to vary from one take to another and so I imagine that the effects are also very different from one person to another. If your sister does have to take something like this make sure she's in possession of some pain killers just in case.  

After the second chemo session the doctor said his glands had all shrunk back to almost normal which means that the chemotherapy is really doing it's thing. He will normally have six sessions of chemotherapy. After the fourth they will do a PET and CAT scan, take a small piece of bone from his hip and re-check what is happening exactly.

After the final chemotherapy they will admit him to hospital for four days to gather cells from his bone marrow and store them. They then take him into a sterile room in clinic for 4 or 5 weeks and make the transplant of his own cells. This is the big plan as it stands right now.

My husbands hair did fall out just before the second session of chemotherapy - not completely, but it was annoying him so he did shave what was left. We went to the shops and bought him some pirate-style bandannas to wear on his head and a few items to go with the "new look"! I don't know how old your sister is or what her style is but with some imagination you should be able to put together a look that she feels happy with. Personally I think this is very important, my husband never did worry too much about appearances but realised the importance to the moral to feel ok about himself when he's dealing with this treatment.

All in all my husband is doing OK, he's determined to beat this thing, is positive and we take each day and each stage as it comes. Don't get me wrong occasionally I crack and have a good cry, I think thats important too! But we still laugh about a lot of things, our two girls keep us "on track" and friends and family make sure that we don't just think of MCL and nothing else. We enjoy a good meal and a glass of good wine, we still socialise whenever we get the opportunity.....life goes on and most days he feels OK, tired maybe and takes regular rests, but OK. He's 52, by the way and was really fit, strong and healthy when this was diagnosed.

I hope, by now, that you have all the news regarding your sisters situation and the plan of treatemnt foreseen for her. I wish her the very very best of luck- it's old hat but it's really true.........think positive, ask questions and don't look at statistics!! They're nearly all out of date, they don't take into account new drugs whose effects haven't yet been monitored, and they were based on people who are not your sister!!

feel free to ask any specifics that I might have had experience of, you never know

meanwhile all the very best

Debbie

Debbie,

  Thanks so much for your reply and the information.  My sister is 57 and is in great physical shape too.  We are all being very positive and look forward to her recovery.  It just seems like such a longgggggg haul.  It is so good to hear positive things.  So much on the internet is negative.  She goes for some tests this Thursday and they want to check her heart and bone marrow before starting.  Her first round of chemo starts after Easter.  It will be 5 days. 

I will pray for you and your family as I am doing for mine.

Sharon

On 3/12/2008 sharonj wrote:

Debbie,

  Thanks so much for your reply and the information.  My sister is 57 and is in great physical shape too.  We are all being very positive and look forward to her recovery.  It just seems like such a longgggggg haul.  It is so good to hear positive things.  So much on the internet is negative.  She goes for some tests this Thursday and they want to check her heart and bone marrow before starting.  Her first round of chemo starts after Easter.  It will be 5 days. 

I will pray for you and your family as I am doing for mine.

Sharon

Sorry Sharon didn't see this part of the reply. Glad to hear your sister is in good shape and positive.........this has just got to be a big big plus, not to mention that she obviously has a concerned and caring family around her.

As you say it's going to take 5 days I guess this must be the newer treatment with some more powerful drugs? Here in Belgium they only have clinical trials for that and my husband was not accepted onto the trial prog. We were disappointed at first but now he is responding so quickly anyway to the drugs they are giving him we're just going to plough on and keep optimistic. We're half way through the chemo that's foreseen..........and yes it does seem, right now, like a long haul. The first weeks I found were the worst, all the worry, upset and concern and just getting to the stage where you take it all in is very hard. Then the first treatment is scary in the sense that you go into the unknown, when you get past that first bit, it sort of falls into a routine. Not common place, not nice, but you just sort of absorb whats going on into your everyday life and get on with it.

I stopped looking at internet for answers, I even stopped asking the specialist for answers....if I well understand there aren't any. Every case is as different as the person who has it! 

I wish your sister all good luck for the first session and thank you for your kind thoughts.

Do you know what stage your sister has?

Do keep in touch if you want to. My husband doesn't link up to the message boards, it's just not his thing, but I find it does help me to talk to others in this situation.

Best wishes

Debbie 

On 3/11/2008 sharonj wrote:

My sister was diagnosed with Mantle Cell Lymphoma about a week ago.  She is going through lots of scans now..pet scan, etc. and is supposed to start chemo in a couple of weeks.  We are very worried because we don't know what to expect.  Will she be extremely ill after the chemo?  Do you lose your hair during the first round?  Will we be able to visit her during her chemo? 

 

Sharon

Dear Sharon,

Sorry to hear about you sister.  First off and most important everyone is different.  I have stage IV colon cancer and have been on chemo for over two years.  I have not lost my hair, ok it’s no longer thick and long but it is how I wanted it back in high school.  The American Cancer Society will give first timers a free wig.  So you and your sister should have a “Girl’s Day Out” and go to lunch then go play with the wigs.  You don’t have to be bald to go.  Try on all the different styles and colors just have a good time.  The hospital I go to have a program called New Outlook and once a month they host a make-up session.  Chemo can affect the skin, dryness, flaking and so on plus chemo people have to be more careful about germs and what not.  She maybe sick, I did not get sick for about month but when I finally did boy was I sick!!  So if your sister gets sick do not just ask “What can I do” she will most likely will answer “nothing” so don’t ask just do.  Look around, men like my husband can not see cob webs while I can hear them being constructed.  Keep up with dusting, load or unload the dishwasher, throw some clothes in the wash or fold them and put them away.  While you are with her see if she wants to take a shower, she may be weak and afraid to fall but with you there it will make her feel better so while she is in the shower, make the bed and change the sheets.  When my sister would bring me home after chemo I would be so tired and she would make me take a shower so she could be there and she would always freshen up my bedroom.  My husband is my major care-giver and he is a wonder plus working all day but we have always had a partnership in our marriage and I feel real bad when I can’t keep up with my part.  So you will be able to help your sister and her family if she has one.  My husband no longer takes care of the lawn, he is too busy taking care of me and the house which is my job so if you know how to mow the lawn do that, my brothers take care of the lawn now.  I have always been strong and independent so it’s hard for me to ask for help but just know that if you or anyone volunteers to do something please follow though, you say you will be there at a certain time then be there.  Help around the house like it was your house; house cleaning is house cleaning.  I know you are most likely working too just take a room at a time or gather the rest of the family or friends and make a party out of it.  Having the support of friends and family is the most important.  Chemo can cause depression so keep a lot of laughter around her.  Watch funny movies, make jokes whatever.  I make jokes about my cancer all the time and make people in the chemo room laugh.  Yes you can be with her in the chemo room while she is there just remember that some places are small and the nurses need room to work and the chairs are for chemo patients so they come first.  If you bring lunch in for her make sure it doesn’t smell, some smells effect chemo patients and may affect your sister, don’t wear perfume or anything that could affect your sister and others too.  There will be times that your sister is not sick but very tired make sure she doesn’t push herself too hard and she does get her rest that is why showing up at the time agreed upon is important.  Let her talk about her illness and her fears.  One of my brothers I can talk about everything that is on my mind no matter what it is good things and bad.  He lets me make fun of myself, make jokes about my cancer even the worries I have.  Not all of my family can handle the dark side of cancer but he is there for me to get my concerns out of my systems, he listens to everything and also makes jokes with me but just being able to listen is very helpful, if you are the type of person to deal.  My husband and other brother don’t really like the dark side talks, which is understandable if you can so much the better.  Sorry this is so long and I wish you and your sister all the best, I will add her to my rosary, keep posting so we can keep up with her progress.  Good luck and stay strong.

Julia

The best thing to do is go visit the oncology center where she will be starting her chemo.  It will give you all an idea of what the place looks like, meet the kind people that work there and the fear of unknown is not so terrifying!  I wish I had done that. 

I am a 6 year colon cancer survivor.  I was sick as hell, sometimes I felt they were trying to kill me instead of cure me.  But...hey, here I am and every drop was worh it!   I took 3 different chemo treatments for 2 hours each every Wednesday for 6 months.

All during my chemo treatment I chanted to myself.."this is killing the cancer, this will make me well"...over and over again!

Everyone responds to chemo differently...I never lost my hair.

I wish her well and success with her treatment!

On 3/11/2008 sharonj wrote:

My sister was diagnosed with Mantle Cell Lymphoma about a week ago.  She is going through lots of scans now..pet scan, etc. and is supposed to start chemo in a couple of weeks.  We are very worried because we don't know what to expect.  Will she be extremely ill after the chemo?  Do you lose your hair during the first round?  Will we be able to visit her during her chemo? 

 

Sharon

Please do a research work for her problem and go for natural healing like eating a lot of fresh fruits that are organic and green organic  veggies juicing and blending it .  Drinking it raw or you may go to grounded green veggies. Go to a nature store like Whole Food and ask question and from there you will see if you ever wanted to have chemo. No red meat eating  and be a vegetarian. You will feel the difference. 

Please and drink a lot of distilled water.

God bless,

Mrs. Chaco 

The most important thing you can do for your sister is be there for her.  She is going to be very weak and tired.  She will be needing someone to help with her family(sorry dont know how old she is) and someone to help around the house.  She may even need help with getting in and out of the shower.  I had radiation pill 131 and had to wait 3 weeks for my thyroid levels to get whacked out and it got to the point that my husband had to help me shower. I was so weak.  So just be there for her!

You will be able to stay with her during chemo talk and read and

whatemver - I was not sick at all - lost hair after second round-best way to handle this is to shave off hair now and work with this look - make it

stylish - no fund seeing your hair go down the drain in the shower.

I would tell your sister not to worry I was diagnosed with mcl

five years ago and I still feel pretty good - stop reading negative

items on internet - some of these article are written 5 years ago -

might look into genesence program and chop with new drug that also

slow down - my direct email address is

i am a 71 year old male and live in New Jersey - treated at

new york hospital - John Leonard and Morton Coleman two leaders in

the field of non-hodgins lymphom- Good Luck

On 3/11/2008 sharonj wrote:

My sister was diagnosed with Mantle Cell Lymphoma about a week ago.  She is going through lots of scans now..pet scan, etc. and is supposed to start chemo in a couple of weeks.  We are very worried because we don't know what to expect.  Will she be extremely ill after the chemo?  Do you lose your hair during the first round?  Will we be able to visit her during her chemo? 

 

Sharon

On 3/11/2008 sharonj wrote:

My sister was diagnosed with Mantle Cell Lymphoma about a week ago.  She is going through lots of scans now..pet scan, etc. and is supposed to start chemo in a couple of weeks.  We are very worried because we don't know what to expect.  Will she be extremely ill after the chemo?  Do you lose your hair during the first round?  Will we be able to visit her during her chemo? 

 

Sharon

Sharon,

I am a 52 yr old female dx MCL in 1/06. Went through 6 rounds of R-CHOP. Pretty standard for MCL. Because of the specific protocol of drugs in the R-CHOP we do loose our hair by the second treatment. Everyone handles the treatment differently, I did NOT get sick, ever. Just tired. Your sister will absolutely need pain meds (Loracette Plus works wonders, Darvocette not so much) The pain comes from the Neupogen shots to help white blood cells recover. The pain is the bone marrow working. Usually in the back up and down, pelvic bones and sternum. Heating pad helps too!  I am 1 year and 6 months post transplant (used mt own cells). You kind of wonder when do we start looking for it to return since we don't know when it started. All I can do is believe that God has healed me and not worry. They tell us this desease is Treatable but not Curable. But I know He can do all things for those who Believe! I took one day at a time, one week, then one month at a time. The time has gone by so quickly.

At my treatment office we can have a guest (if there is room), bring our lunch, water. She will need to use the restroom frequently.

Ask the nurses questions, don't rely so much on Google info. They tend to give mostly negative. Remember; each patient responds in his or her own way. The doctors info is soley based on past referrence; ie the patients previously treated and followed. Thus the low success rates. Each year the diagnostic testing and treatments are getting better, and thus we are surviving longer.

God Bless you and your family. Please keep in touch!

Kathy  :)