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Newly Diagnosed with Waldenstroms Stage 4

hopeful lady
Posts: 36
Joined: Apr 2016

Hello all,

I am new to this arena.  At my 60 year old routine exam last month my blood counts were down and I was severely anemic. Many tests later (blood work, bone scans, and bone marrow biopsy) they have diagnosed me with a rare non_hodgkins lymphoma called Waldenstroms. I am to start chemo on April 28th using CDR combo.

My bone marrow biopsy showed 90 percent is cancerous.I have slightly enlarged spleen and liver with disease involvement. The anemia is better with a multi vitamin. I do not have any other symptoms.

 

My oncologist has never treated this. He says if I respond to try I may have a two year survival rate. 

Do any of you have knowledge of this disease and do you think there are better trx centers? I am at a military facility that has access to all the meds. 

 

Thanking you all in advance and praying for recovery for us all.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3499
Joined: May 2012

Welcome, Hopeful.

I have heard of your disease and know that someone or other has posted regarding it here in the past, but I cannot recall who or when.

Survival estimates are statistics, and usually out of date when given to a patient.   Do not assume that they have any accuracy in your particular case.  Objectively, you have ADVANCED DISEASE, but know that unlike organ cancers, people survive Stage 4 lymphomas all the time.   

I used to receive VA medical care, and know that for cancer, they send people out to specialists civilian centers.  The "military system" of which you speak is probably similiar.  You need to request to see a civilian doctor who has familiarity with your specific disease, not some guy who says he has "never treated it before."  Tremendous improvements are being made against the rarer strains of HL/NHL all the time.  You need a doctor who is up to date.

"CDR" is not listed at chemocare.com as a routine acronym. There are dozens of common acronyms for the 40 or so common types of HL/NHL. I will continue to look for "CDR."  But, the "C" drug is apparantly Chlorambucil, and the "R" very likely Rituxan.   Chlorambucil:  http://chemocare.com/chemotherapy/drug-info/chlorambucil.aspx 

A general overview of the disease, which is described as very "indolent" (meaning slow-moving, non-aggressive). Mentions some new drugs used against the disease.  http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300163

Good luck.  Demand a sub-specialist...I know personally that usually, the VA will provide for this, and possibly your medical center also.  Realize that the first few people you ask for a specialist from are most likely government toadys,  people trained to say only one word, "no."  Climb the beaurecratic ladder past them until you meet someone with a brain who is authorized to say "yes'  (saying "yes' in the government requires seniority and special credentials).   Assume you will live ten or more years with this problem.

max

hopeful lady
Posts: 36
Joined: Apr 2016

Thank you so much for the info. I have to tell you that my Army doctor is the most kind and compassionate person on the planet and he has been by my side every step of the way. He stays in touch with all the top treatment centers and stem cell transplant teams. 

We start our journey tomorrow and did get a second opinion. I feel very comfortable with the RituxinCytoxinSteroid combo he is recommend8ng. 

 

I have three grown daughters who live in my town..one is an RN that can help me a lot. I feel all wrapped up in good hands all the way around.

 

Very weird coincidence.... the same week I was diagnosed an older gentlemen came in with Waldenstroms. I have been examined by every chief of every specialty clinic and they have all done extensive research on my disease....I go into my first treatment tomorrow morning with total confidence in my team and faith that I will be ok.

 

I love reading aboueveryone's experiences. It gives me so much hope.

 

My best to you and my prayers are coming your way!

Have a blessed day!

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Dear Hopeful Lady, welcome to the group. I'm glad you came here and I hope you will find this forum helpful and supportive.

There is a woman in my local support group with Waldenstrom Macroglobulemia (WM). I don't know exactly how long she has been a survivor but I know it is much longer than the two years your doctor indicated.

I would suggest (urge) a second opinion. Is your oncologist even a hematologist? Since he admits he has never treated this disease, you could ask him to refer you to someone who has. Or you could seek another opinion on your own. If it were me, I would try to contact a university hospital or a major cancer center. Even another hematologist oncologist in your area who is not affiliated with your current doctor would be a good start. Preferably before treatment begins. 

My lymphoma nor yours are considered curable. But they are treatable. I have been a survivor for 3 1/2 years now. Life is good. 

Blessings and hugs,

Rocquie

 

hopeful lady
Posts: 36
Joined: Apr 2016

Thank you for sharing. My doctor has proven to be totally awesome and he is a hemotologist/oncologist with many years of treatment....Waldenstroms is very rare. He has gotten a second opinion for me and stays in touch with Mayo Clinic and all the major Cancer centers for treatment. We have researched the meds together and I feel very comfortable now with my team. I was so terrified before I d8d my research. 

 

I start trx tomorrow morning with rituxin/cytoxin/dexamethosine.

There are three other combos we have discussed and after reviewing 3ach we both feel like this is the best choice for me.

 

I am so thankful to read about people who have gone thru treatment.

I am looking forward to tomorrow but I know it will be ok.

Prayers Sent to you and yours.

po18guy
Posts: 1083
Joined: Nov 2011

If your hematologist has never treated this disease, that is not a good indicator of treatment success. If possible, I would go to a National Cancer Institute designated cancer center, as they very likely have extensive knowledge of Waldenstrom's. Although rare, it is a B-Cell cancer, and there are many treatment options for B-Cell Lymphomas. Had I not gone to such a major center, I very likely would have died in 2008. 

hopeful lady
Posts: 36
Joined: Apr 2016

I am so glad you are doing well. I really freaked out when I was first diagnosed....really did not know who to trust. I read a lot about alternative meds. My oncologis/hemotologist did get a second opinion. He is also well versed in all the drugs currently being used in Waldenstroms. I have learned to trust him. He has had every specialist from every field examine me. I am in good hands. I was too scared to trust anyone. I have my first trx tomorrow and I can truly say I am ready to move forward. 

 

So happy to make your acquaintance. My continued prayers for you!

MK
Posts: 1
Joined: Apr 2016

Hi Hopeful Lady, I have Waldenstrom's Macroglobulinemia.  I was diagnosed last year in June.  My spleen was enlarged and bone marrow biopsy showed 70% cancer.  I started treatment In july of last year.  Six months of once a month infusions over 2 days of chemo Bendamustine and targeted antibody treatment Rituxan.  The chemo was two infusions in 2 days.  It was given with a steriod to help with side effects.  The Rituxan was one infusion given with pre meds of Tylenol and Benedryl, for side effects.  The Rituxan should be given very slowly at first because of side effects that can occurr.  I never had any because they went so slowly.  These are my observations.  

I finished the chemo in December and am now on a maintenance program for the next two years of Rituxan infusion once every 2 months.  My Oncologist consulted Mayo clinic, his mentor there, for treatment advice.  

I suggest that you find a Dr. who is familiar with this more rare form of cancer, it is imperative really.  The outlook is much better than 2 years!

Look up Wladenstrom's on the Mayo Clinic site, there is a lot of information there for you, as well as other hospital sites that treat Waldenstron's.

Please find another Dr.  

I wish you all the best and send healing thoughts

 

hopeful lady
Posts: 36
Joined: Apr 2016

Hello dear soul! I was so excited to h3ar from someone else with this disease...so glad your treatment went well. I will have a very slow all day infusion of rituxin in the morning as well as the steroids dr7g and my chemo is cytoxin. I will do a cycle every 21 days.

 

I hope to have a good response. My oncologist/hemotologist was also considering your chemo drug...did you have any neuropathy with that choice? I am so happy to hear that trx has gone well. I know our bodies are all different and will respond differently even to the same drugs. 

 

I have been taking allopurinol before trx for tumor lysis...on Thursday I broke out in a bad rash. A dermatologist did several biopsies...waiting for results...he thinks my cancer is showing up in my skin now. The rash is gone after stopping the allopurinol. Still confused about this.

 

You give me so much hope...thank You!

 

My prayers are for your continued recovery.

 

Did you work any thru trx? I do not know what to expect. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3499
Joined: May 2012

Your followup information changes my view of your situation a lot, Hopeful.

It is great that your doctor has researched your strain and stays linked to the best-practices information regarding the latest drug combinations against it.

It is also wonderful that he is someone you trust highly and have a good rapport with. These are important issues.

Some things are common to nearly all lymphomas: drug side-effects, etc.  Please stay in touch and ask for views when you have questions. Your experience will no doubt be valuable for the next writer with your rare strain.

max

hopeful lady
Posts: 36
Joined: Apr 2016

Thank you! My first chemo try was well tolerated...... My team helped me every step of the way. 

I am at peace! 

I know the battle is ahead. I am so thankful to have you all to share the journey.

 

My very best to you!

Anonymous user (not verified)

my mother in law has had this disease of the platelets for 30 years. She is 94! Chin up! Stay calm, return fire. Very hopeful situation!

hopeful lady
Posts: 36
Joined: Apr 2016

Thank you.....I am sure that trx options are even better today than they were when your mother_in-law was diagnosed. What a great testament to this disease. 

I just enjoy waking up to each new day. 

Thanks for the positive advice.

 

illead's picture
illead
Posts: 860
Joined: Aug 2012

I was just looking at the Lymphoma Research Foundation's homepage and there is a success story of a woman who has Waldenstroms.  Thought it would be encouraging for you.

My best,

Becky

hopeful lady
Posts: 36
Joined: Apr 2016

I could not find the story...do you have a link? Thank you.

Mary from NJ's picture
Mary from NJ
Posts: 60
Joined: Apr 2016

I found the following information on the American Cancer Society website that may be worthwhile for you.....

   http://www.cancer.org/cancer/waldenstrommacroglobulinemia/detailedguide/waldenstrom-macroglobulinemia-treating-general-info

I also found this on the Leukemia & Lymphoma Society website:  https://www.lls.org/sites/default/files/file_assets/waldenstrommacroglobulinemia.pdf

 

hopeful lady
Posts: 36
Joined: Apr 2016

Thank you.....great info. Sometimes I have to stop researching and just kay it all down and rest. It can get overwhelming. I love reading what each of you experience and how you counter side affects. 

 

My two weeks off chemo have been great.lots of energy and  I feel l8ke my old self.i really thought I would never feel ok again. I was actually scared of my own body. I am still me and that is  important ...I am not my cancer. 

 

My very best to every one and I look forward to hearing about your journey. 

 

 

Tlj_1979
Posts: 4
Joined: Jun 2015

Hi there- just to add some info... My mom has waldenstroms and was diagnosed 11 years ago.. Many people live a long time with this disease. I suggest you reach out to the IWMF - international waldenstroms macroglobulenemia foundation, they are very active and have an email list that you can join of lots of people with WM, some who are seriously experts on the latest research.  This has helped us so much.

moat people with WM are very receptive to chemo and have nice long remissions

tricia

 

hopeful lady
Posts: 36
Joined: Apr 2016

That is very encouraging. I am told response can be based on staging also.......I am hopeful that my chemo works. What try did your Mom get? So glad she is doing well.I did stumble upon this organization...I plan to go back and research more. Thank you so much!

 

Dianne

whinnie11
Posts: 1
Joined: Jan 2017

Hello.  It has been a while since I posted here-----a one and only time as I was all alone.  I have Waldenstroms.  I have been sick since 1999 and was diagnosed in 2003.  Your doctor is a bit outdated on this disease.  I have learned to live with my disease and actually, embrace it, as it has shown me that every day on this earth is a gift and I enjoy about 99 percent of my days not.  I appreciate my surroundings and have found that attitude is important....fear is NOT important....as death, eventually, will happen.  It is normal.  So, I enjoy every day and have lots of fun.  I have also found that Rituxin (in the approved doseage), is way too much for me and believe that the makers of Rituxin require me to take around 800 miligrams.  I take 100 only.  I did take the 800 at first....lost my business....lost my memory.  Then, I took control of MY OWN body.  Please feel free to talk with me on my e-mail.  suesawyer@wildblue.net            Good luck to you.  Waldenstroms has not been as awful as I once thought.  Find a good POSITIVE doctor who knows the disease.  Sue

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