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Mom recently diagnosed with MCL

jkreyn
Posts: 6
Joined: Jun 2017

Hi everyone

I have been snooping around this board for a bit and have found you all to be so informative, helpful and supportive!  So, I thought I would post with a question or two.

My mother is 76 and was (finally) diagnosed with non-blastoid Mantle Cell Lymphoma last week.  She goes for her port on Monday and her first round of Bendamustine and Rituxin is Wednesday and Thursday.  We are hopeful that these drugs work for her and that she will begin to feel better soon.

My mother's spleen is VERY large and is giving her a great deal of pain when she moves and breaths.  She has trouble walking anyway (chronic pain due to arthritis) but this is really pretty bad.  She has serious GI upset as well- lots of burping and nausea (some vomiting).  She isn't eating well because she feels full and has a lot of pressure in her mid section due to this spleen I think.  Needless to say, she is pretty weak and really feeling crappy.  Not a great place to start from with her chemo beginning next week.

I am her only support person (family) here, although she does have a lot of friends.  

Will she begin to feel some relief from these symptoms once she begins her chemo?  If so, how quickly will she begin to feel better?

Do you think I need to sleep at her house (she lives alone in a retirement community) the first few days of these chemo round?  

I appreciate all of your thoughts, insights and suggestions.

Jen in Raleigh NC

Bee1968's picture
Bee1968
Posts: 9
Joined: May 2017

Hi Jen, Yes if I were you I'd stay with her after chemo.  I have Hodgkins in my spleen and suffer from the same things your Mom is experiencing. Keep her drinking and eating small frequent meals. It doesn't matter what she eats/drinks just as long as she can keep something down. I felt relief after my chemo treatment, but it wasn't immediate. It was within the week of having it. I hope this helps. I will keep you both in my prayers.

jkreyn
Posts: 6
Joined: Jun 2017

Thank you for your response!  I don't know if mom's cancer is in her spleen or not, but she has many many nodes that are lit up on PET.  Her spleen is also enlarged (does that mean she has it IN her spleen)?  

So are you still suffering from the same symptoms?  How many rounds of chemo have you had?  Sorry for all the questions but I have a lot of angst about things right now.

Jen

Bee1968's picture
Bee1968
Posts: 9
Joined: May 2017

Hi Jen, 

I'm sorry I do have cancer cells in my spleen. I would wait for them to diagnosis your Mom.  Yes, I still suffer from the same symptoms but they are intermittent. I've had 5 doses of ICE, 2 treatments of Brentuximab, 4 mths of Opdivo. I have had stem cell collection Autologous (my own stem cells). I've geared up to go inpatient to receive my transplant and was halted due to tests.  I understand about your anxiety. It's hard to watch someone go through this.  Just be there for your Mom. She's going to be tired. Be patient with her, nothing is going to sound good to eat or taste good.

po18guy
Posts: 994
Joined: Nov 2011

Sorry to hear of this. One of the standard treatments of MCL is a drug called Rituxan. It is generally well-tolerated (allergic-type reactions during infusion the most common) and seems to melt the tumors away. Relief is often felt quite soon after infusion begins. The dosage can be adjusted and even missing an infusion will not greatly affect the outcome. MCL can be either aggressive or indolent (slow-growing). There are good treatment options should the Rituxan not be effective. Aggressive lymphomas grow quickly, but also die quickly when treatment hits them. Your mother "should" be able to live out a relatively normal life span, taking into consideration her overall health. If she cannot achieve remission, then a maintenance treatment regimen might be considered to extend her life span. 

As to support, I think it would be a good idea to speak with her friends and let them know that they can be true friends at this time, perhaps even giving you a break from time to time. This need not be a traumatic time for her, but one of closeness, deepening of relatinships, and of love. What is often lost in the confusion of a cancer diagnosis is 1) love and 2) that life does not stop - it changes, and that provides the opportunity to see the blessing of life in a new light. 

jkreyn
Posts: 6
Joined: Jun 2017

Po- (is that your name? :) ) Thank you for your interest, your information and your support. You have lovely words and I have printed them so I can remind myself of the truth there.  

She will Bendamustine and Rituxan beginning on Wednesday/ Thursday.  I am hopeful that the cells begin to die off quickly, as hers is a fairly aggressive (70%) MCL.  

Thanks again, Jen

po18guy
Posts: 994
Joined: Nov 2011

po18guy is just a user name. You are very kind. I was not certain if Bendamustine would be included but it, combined with Rituxan, is the gold standard in treating most B-Cell Lymphomas. I have received Bendamustine along with two other drugs against two T-Cell Lymphomas which are substantially different from B-Cell Lymphomas, such as Mantle Cell. The combination of Bendamustine and Rituxan should work very well in your mother's case. Response (and relief from the pain) may begin soon after the first infusion. Let us pray and hope that is precisely the case.

Now, as to life itself, none of us is guaranteed even one additional day. Therefore, it is good to spend as much quality time with her as you can. Who knows? You could pass before she does! Such is life. Caring for someone during a time of sickness is how loved is proved. Just be aware that watching someone suffer can be more difficult than it is to suffer. The sense of powerlessness can be frustrating. So, take care of yourself while you care for your mother. Just know that your presence to your mother is a comfort that is beyond words.

The cost of cancer treatment can be astronomical. A hug and your head on her shoulder? Priceless. 

illead's picture
illead
Posts: 837
Joined: Aug 2012

My husband was diagnosed July '11 with MCL.  His spleen was the size of a football.  He did not have MCL in his spleen, rather his bone marrow (90%).  That is basically why his spleen was enlarged, it had captured most of his blood, thus his counts were very low, he was near death.  I only say this because after his first infusion with Bendamustine/rituxan, that same day, he came home, took a nap and when he woke up, my son and I could tell he was already feeling better.  They say you don't feel effects for about 3 days but he sure seemed to.  He just steadily improved and was in remission in 6 months (if not sooner).  It took some months for his spleen to go down but it gradually did.  He had no bad reactions to the B/R although some people do.  One good thing is that the Benda does not attack the hair follicles so your mom will not lose her hair.  I agree that you should stay with her at least for her first round, she will continually feel better, so you will know if you need to stay for any other infusions and how long you should stay.  Of course she will know also, and it is so important for cancer patients to have a supportive caregiver.  She probably feels safe now knowing she has such a caring and special daughter.  If you want to read more about Bill's journey, you can just click on our picture and of course just ask if you have more questions.  Hang in there, things should turn around quickly.

Thank you for being such a good daughter,

Becky

 

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