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starting our MCL journey and so scared

khdh2015's picture
khdh2015
Posts: 11
Joined: Mar 2015

I an new here and lost the last thing I posted...not sure where I posted it! My husband was just recently diagnosed with Mantle Cell Lymphoma. We go this week for his bone marrow biopsy and PET scan results. They have already staged it at 3 with the CT scans and said it could be 4 when we get these other results. We are so scared. We are self employeed and didn't have insurance so we decided to take out the Obama care. Our Cancer Center wants to send him to a specialist and treat him aggressively with the chemo as an inpatient. (Our Cancer Center can only treat as an out patient) No big hospitals that do the stem cell harvesting and transplants  will accept our insurance and so we are still waiting. Our Cancer Center can and will treat him but it won't be as aggressive as it would be as an inpatient. I am so scared that we can't get him in the bigger hospitals for him to be treated aggressivley...any information you can help us with would be appreciated. Is it necessary to have the stem cells harvested and have a transplant after chemo and radiation? He is 52 years old and no other health problems and that is why they said they wanted to send him to have the aggressive chemo. We are so scared and want him to get the best care possible!! Can anyone share their experience with us...we need Help and HOPE!!! Thank you

Max Former Hodg...
Posts: 3690
Joined: May 2012

Khdh,

Welcome to this Board.  A new cancer diagnosis is always cause for fear, but the more you learn ordinarily the less intimidating it is.

Mantle cell is pretty uncommon, but we do have a few regulars here who have been fighting it for years and who are very knowledgeable regarding it. Most people treated for lymphoma, even stage 4, do not require stem cell transplantation, but I am not very conversant in the particulars of Mantle cell.

Illead especially will no doubt respond to you soon.

max

illead's picture
illead
Posts: 874
Joined: Aug 2012

I just now read your post and it is late.  I have a doctor's appt in the morning but I will get back to you as soon as possible.  Please don't worry,  I know it is very ominous but believe me, we have been through it all.  You can click on our picture and it will send you to our story.  Read that and know there is much hope.  I will get back to you as soon as I can tomorrow.  We are in CA so the time defference may be a lot for you but hang on, there is much hope out there and I am happy to give you help and support.

Thinking of you, Becky

Anonymous user (not verified)

I have a family member facing the same issues with Obamacare. Some hospitals claim that with the bureaucratic strings attached and the very low reimbursement rates they actually lose a lot of money on Obamacare patients and simply can't even cover their costs. Plus any paperwork is onerous and the reimbursements are very slow coming. But there are a few places which will take it. Are you near a major metro area? I suggest contacting your congressional representatives to help with getting a list of hospitals which will accept your Obamacare plan. You could also look at clinical trials. I also recommend applying immediately for SS disability. Once you get that you will qualify for Medicare after a 2 year waiting period. I know that two years seems long but a battle with cancer can take many years. All my best. I am truly sorry for your predicament. Things like this should never happen.

illead's picture
illead
Posts: 874
Joined: Aug 2012

     First of all, I want to say that I know what you are both going through and how scary this is for you.  Please know though that much progress has been made with MCL and what you may be reading online could be old information.  There is so much more now than there was even a few years ago.  My husband was 62 when he was diagnosed and was stage 4 and very sick (very low blood counts).  Please know though that with lymphoma staging is not as ominous as with other cancers.  It is not a death sentence.  My husband was given Bendamustine/Rituxan as an outpatient.  That is one of the standard chemos for MCL, but they also use RChop and others which are more aggressive.  I think the jury is still out on whether the stronger chemos will give a longer remission.  My husband did relapse after 2 years and is now on Ibrutinib, which is a target drug which was only released 2 months prior to his relapse for MCL only.  I do not know if it has yet been released for other lymphomas.  He immediately went back into remission and it has been a year.  He is doing great.  There is a mixed feeling about STC s for MCL.  We emailed several doctors, who are experts, one from the US and 2 from Germany.  They all leaned on the "no" side, so we decided against it.  You can find some good information on the Lymphoma Research Foundation site (LRF) and go to Mantle Cell.  They are doing a lot of research on MCL.  A couple of doctors who are experts are Dr. Brad Kahl from the Carbone Cancer Center through Univ of Wis. and Dr. Andre Goy (I think he is in NJ).  Your husband's oncologist may want to confer with some of the experts, there are others.  I am not an expert but I don't know why your husband would need to be treated as an inpatient.   Maybe that idea will change once your doctors get some more information.  As GKH said, the insurance thing is a sad state of affairs, but there is funding out there and other help.  Hopefully your cancer center or affiliation has a good financial dept. that can help you.

     I hope this has been some help to you both.  Just knowing there are others who have faced this may help to calm you.  We are all here for you on this forum, please know that, and I am happy to answer any other questions or just be a listening ear.  You can private message me too if you wish.  No email addresses are exchanged.  My husband's and my thoughts are with you and we will be here for you.

Our best,

Becky & Bill

Max Former Hodg...
Posts: 3690
Joined: May 2012

KHDH,

I just read through Illead's replies rather quickly, as I too am headed out the door, but please do note from Illead's post that Bill has NOT had or required a stem cell transplant to this point, which was one of your stated concerns in your first post.

Illead is absolutely the best informed here on Mantle Cell; you are lucky having a resource such as her, as we all are.

max

khdh2015's picture
khdh2015
Posts: 11
Joined: Mar 2015

Thank you so much for taking the time to respond!! It really means alot to us! It is such a scary time and they are throwing so much information out there and wanting to treat him so aggressivley that it has us scared to death!! It is wonderful how well your husband has responded without the SCT...they have made us think that he really needs that and it is comforting to know that your husband has done so well without it! They said it is because my husband is only 52 years old and no other health problems being the reason they want to treat him as inpatient and so aggressively!! They talk like they are going to make him a very sick man before they can make him better! Reading all the information on the internet has been informative but also very scary!! Thank you so much for replying and I know we will be asking alot of questions before this is over with! We go tomorrow for the results from the bone marrow biopsy and the PET scan he had this past Friday!! We are praying it will not be as bad as they have us thinking it will be. I know they have to give you the worse, but it is so scary when you are facing something and you have never heard of it before now. Thank you again for your help and information! It has really helped our feelings!!

Thanks again,

Kevin & Donna

ps sorry if I am rambling on...I am just so nervous about everything!

illead's picture
illead
Posts: 874
Joined: Aug 2012

Well, I did a little research.  Not much, but I do see that a more aggresive approach is one of the ways to treat young, healthy patients diagnosed for the first time.  I just haven't been online with MCL for quite awhile.   That must be where they are going with this.  I am sure they have consulted other doctors in the field.  Our doctors have not been experts either but they have gone by the standards set out by the researchers as I am sure your doctors have also.  I feel for you, I know this is difficult to wrap your head around and then to face such arduous treatment is a lot to decipher.  Just know Kevin and Donna that most every oncologist and anyone affiliated with them are very deep caring.  Listen to them and be sure to ask any questions no matter how many you have.  Start a notebook and take notes.  You think you will remember but it all becomes a blur most of the time.  Also ask for copies of tests etc and also CDs.  You have the right and they do not mind.  I am so sorry you are having to deal with this.  Just talking to you brings up so many emotions for me.  Bill and I are able to put it in a different place most of the time and get on with our lives, but it is a hard adjustment.  Kevin will do fine and so will you.  You have a special role as caregiver and it is a special act of love, although I certainly don't wish it on anyone.  Please let us know what you find out tomorrow, I monitor this forum everyday so I will always be here for you and so will many others.  We are very supportive of each other.   Bill always says "you can't take a knife to gunfight" so maybe this is the time for the big guns.  Hang in there both of you and most importantly hang on to each other, you will get through this.  My prayers will be for your doctors and of course that you both have strength.

Becky

khdh2015's picture
khdh2015
Posts: 11
Joined: Mar 2015

Thank you so much Becky! It means alot to talk with someone that has been through this! I am going to sit down with Kevin tonight and see what questions we can come up with and write them all down. We have a feeling we are going to hear stage 4, but the dread of hearing the Oncologist say it...well, I am sure you understand! I will sure keep you informed along this journey! Thank you for researching it some for us. I told him I will be by his side 100%. He will not fight this fight alone!! Thank you again, and I will try and get on here tomorrow night and let you know what we find out! Thanks for the prayers!

Donna

illead's picture
illead
Posts: 874
Joined: Aug 2012

Again, don't get too upset with a stage 4 diagnosis.  Most all lymphomas have intense symptoms especially if not caught soon, but as I said it is different than other cancers and staging is I would say more of a description rather than a degree of condition.  Most lymphomas including MCL respond dramatically and rapidly to chemo.

Try to sleep well,

Becky

khdh2015's picture
khdh2015
Posts: 11
Joined: Mar 2015

Hi Becky, thank you so much for all of your encouraging words. They did stage it at 4 today. We went in expecting to hear that but also hoping for a better result. They are still trying to get us in at a close hospital that will do the stem cell harvesting and transplant. Keving and I have called the Cancer Center Treatments of America in Atlanta and they called us today and told us that they will accept our insurance and would take Kevin as a patient there!! So along with the bad, thank the good Lord, we also got some good news. We are giving the Cancer Centers around here until the end of the week to figure it out and if they don't we are heading to Atlanta next week. It is about a 4 hour drive from here but we will do what we have to do in order for him to get the treatment that he needs. Thank you so much for everything! I will keep you updated on what all we find out!

Thanks again,

Donna

 

illead's picture
illead
Posts: 874
Joined: Aug 2012

So sorry it has taken me so long to answer, I have had a busy day.  You have certainly had a lot to digest in the last week, it is overwhelming isn't it?  It sounds like you both have thought this through and have come up with a good plan.  I have seen the Cancer Centers of America advertised but don't really know a lot about them.  I am sure that they are trustworthy and will go along with the correct protocol.  I know it is a relief to know the insurance thing will not be a problem.You will be in my thoughts and prayers and thank you so much for keeping us informed.  As always, I am here for you.

May you find strength in each other,

Becky

khdh2015's picture
khdh2015
Posts: 11
Joined: Mar 2015

Hello, you are so right about things being so overwhelming! We were thinking for sure that our Cancer Center would be able to get us in a closer hospital, but that never happened. So we took things into our own hands and started the process of going to the Cancer Center Treatments of America. They are on the ball. We called them to tell them yes, we wanted to come there. They sent us the forms and we filled them out and faxed them back and that afternoon they were calling us back and giving us an appointment. Our travel day is Thursday, March 12th. They will start evaluating Kevin on the 13th, yes, Friday the 13th! They even asked him if he was superstitious? Lol Of course, he said, a little but he is ready to get started! They have already sent us our appointments for Friday...the experience has already been amazing and we haven't even been there yet! It is nice to know someone cares and is ready to get this going just like us! The evaluation will take 3 days and they told us to come and prepare to stay for an extra 5-7 days because if everything goes as planned they will go ahead and do his first treatment while we are there. So thank the good Lord things are finally moving forward and we are closer to getting him well and all of this behind us! Thank you so much for all of your encouragement and support!! We will continue to let you know how everything goes!

Thank you again,

Donna

Max Former Hodg...
Posts: 3690
Joined: May 2012

Dopnna,

I have not known anyone who used one of the CTCA locations, but have read good reviews of them.  Just having people who answer questions and who are optimistic is worth a lot.  When I ask a medical professional a question I want an answer then, not next week; the delay makes them seem too much like lawyers !

Bless your research. I feel you are doing the right thing by travelling to a facility where you can get answers and a friendly voice.

max

khdh2015's picture
khdh2015
Posts: 11
Joined: Mar 2015

Thank you Max!  For the first time since he has been diagnosed we are finally feeling some hope!! Thank you so much for replying and your support! I am so thankful that I have found this forum...it sure helps chatting with new friends that have been through this and can help your feelings along the way! I will be updating as we start this journey and try to help anyone else along the way that I possibly can!

Thank you,

Donna

illead's picture
illead
Posts: 874
Joined: Aug 2012

I am so glad that you are at least feeling at ease with Kevin's treatment and that you feel so comfortable with the cancer center already.  That is always very  important.  Most all centers are very caring, so I am sure you will find that there also.  So your journey begins, not what we signed up for, I know.  It is not a life lesson any of us deserve, but you will find that time will fly and you will find a balance in what some of us call the new normal.  We look forward to good news in the future.

Thinking of you as always,

Becky

grannyx4
Posts: 9
Joined: Feb 2010

How is your husband doing?

My son goes next week for his scans.  He is 5 yrs.

remission after his stem cell transplant.

 

 

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