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My story begins...

Francyn's picture
Francyn
Posts: 10
Joined: May 2016

Yesterday was not a good day. I was told I have Lymphoma.  Three weeks ago, I noticed my left leg was swollen. I went to the doctor (good thing I didn't just brush it off), they sent me for an ultrasound to rule out a blood clot and took me off one of my meds. No blood clot but they said my lymph nodes were swollen and wanted me to have a CT scan.  A week later I did. That night my doc called and said the lymph nodes were clustered and swollen, that I need to see a surgeon to find out why. This guy did not sugar coat it. We looked at the CT scan and he showed me how the mass had pushed my bladder and uterus to the side, that several nodes were involved, and that his top three guesses were Lymphoma, Lymphoma and Lymphoma.  Surgery is scheduled for Tuesday to take one of them out for a biopsy. I am in disbelief! Cancer doesn't run in my family. I've always been the one who gets the sprain instead of the break, the virus instead of the flu. Not this time.  I found this forum and read many of the posts and want to thank all those who comment, share their stories, and offer advice. Good to know I'm not alone in this. This year has been a medical nightmare. Started on insulin for diabetes a year ago, had an elevated creatinine scare in February, now this. And I thought my life was too complicated before!

 

 

 

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi Francyn,

The best thing to do is to keep on fighting the disease and to try to keep your spirits up. Lymphoma can be cured.

I had primary central nervous system lymphoma (PCNSL, a brain tumour) in 2012. Now I am NED (no evidence of disease) since more than three years. The treatment was tough but it was worth it.

Good luck!

Sten

Kaniksu
Posts: 54
Joined: Nov 2015

I know you must be traumatized ...I am feeling for you. My journey began in Sept of 15. Since that time I have been through RCHOP chemo and radiation.My oncologist did not remove my lymph node from the groin..I discovered mine from a lump n the groin area. Your life has changed in an instant and for the next several months you will be consumed by this. I had a hard time believing my doc that the prognosis was good, but now that I have finished treartment and getting some energy back I am feeling more optimistic ...Keep us posted on here about your process and we will all gladly offer any helpful hints we can from our experience ...hope to hear from you soon.

nancy

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

Hi Francyn,

After reading your message, I realize your biopsy surgery is scheduled for tomorrow....wishing you a quick recovery following the surgery. The most important thing is to determine the exact type of lymphoma you have so that your doctor can decide on the very best treatment for you if treatment is needed at this time.  I received 2 extremely different treatment recommendations (one said chemo only and the other said chemo was not necessary at this time, but sent me to a large city cancer center to discuss radiation options).  I continued seeking more opinions until I felt very comfortable with the recommendation for treatment.  If you are not comfortable with what you hear, seek multiple opinions.  Keep telling yourself that you will win this battle!  You will find great support from others on this discussion board.  Wishing you brighter days!  

Mary

Francyn's picture
Francyn
Posts: 10
Joined: May 2016

Today the answers begin.  I started writing a journal for myself and also decided to do a video blog.   I get great comfort from watching others that have gone through this on their blog so I thank those who share their stories.  It all hasn't really even begun to sink in. Before my leg started to swell, I had no other symptoms. I don't know if it psychosomatic are just being more aware, but I can feel the knot or pressure in the  left side of my abdomen. It feels like menstrual cramps, but I'm 10 years past that. thank you for commenting on my post and sharing your advice. I am absorbing everything and appreciate it all.  Keep replying. I appreciate everything. 

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

the best results today. Remember to have a significant other or friend with you to take notes and help you generate questions

during this surreal time. We all have been through it.

 

Steve

Max Former Hodg...
Posts: 3699
Joined: May 2012

With everyone else I welcome you, Francyn.  I love that name, and it reminds me of the Author childrens' show on PBS (Author's sister is named Francyn). It seems like yesterday they were watching it every day, but it was 15 years ago !  Damn !

It usually takes a few days for biopsy results to come back, but some places are faster. There are about 45 strains, or types, of lymphoma. Five of these are HL ("Hodgkin's Lymphoma"), and about 40 are NHL ("Non-Hodgkin's Lymohoma"). So you can see, NHL is much more common.  Among the very most common strains are Follicular NHL and Large-B NHL.  Strains vary dramatically in aggressiveness and prognosis, but nearly all strains are readily treatable, and most can be put in long-term or even permanent remission. When the doctor tells you your stage, ask if it is "A" or "B".  He will know what this means; it is an indicator of aggressivity or indolence of the cells.

As was mentioned, take a relative or friend with you to keep the data straight. Your journal is a great idea.  Keep a folder of everything you are given.  Get PAPER COPIES of every result you are informed of. All doctors gladly do this. Every biopsy, every lab result. Get paper summaries of every CT and every PET scan. Although many clinics allow patients electron access to their records, keep a paper file also.  Lymphoma in general does not run in families, and no family members previously having had the disease is not uncommon.  There is some weak, tenous data that suggest greater liklihood for a child to get it if a first-degree relative has had it, but this is not a strong correlation. I had 17 aunts and uncles, and not one ever had lymphoma, although one aunt did have leukemia, which is also a WBC (white blood cell) cancer. I have at least 50 first cousins, and not one has ever had lymphoma to date.

Your doctor telling you his guesses for your pelvic mass was "lymphoma, lymphoma, lymphoma" took me back to the first time a doctor looked at my CT results via e-mail. I was there with him; he is a general surgeon.  He said, "Only a biopsy can confirm cancer, but I do a lot of cancer surgery, and you are torn up with lymphoma !"  I sheepishly asked, "Is it bad ?" He said,  "It is everywhere -- from the lower neck to the groin, across both sides, wrapped all around the escophagus, wrapped around the superior vena cava.  Yea, its bad !"

After six months of chemo, I was well. I have been in "CR" ("complete remission") since.

If indeed cancer, your results thus far sound like probably at least Stage II disease.  If the biopsy is positive for lymphoma, you will be scheduled for a bone marrow biopsy, in which a small piece of bone marrow tissue is removed, usually from the top of the hip bone.  The bone marrow biopsy is nearly always an outpatient proceedure, and will last an hour or less. Mine was done in my oncologist's office.  You will most likely be looking at months of a combination chemotherapy set of drugs. Most lymphomas are usually not treated with radiation, but some lymphoma patients are radiated, especially in cases of very mild, localized disease.   Surgical removal of lymphoma, except for the biopsy, is not a treament option.

We are pulling for you and for the day when you enter "CR" forever...

max

 

hopeful lady
Posts: 36
Joined: Apr 2016

Hello,

I can feel your "shock" about your diagnosis.  Sometimes it is like walking in a fog trying to determine if your world is the same or you are seeing it through a different lens.  I was diagnosed in April with a Stage 4 rare form of non-Hodgkins Lymphoma called Waldenstrom's Macroglobulimia.  There is no cure but treatment can put me in a remission for a couple of years.  I had never had any illness or taken any meds before this.  My lab work was ideal.  Not this year.... this year it all showed up on my routine blood work.  My bone marrow biopsy showed 95 % of  my blood cells are cancerous, so much so that there is no liquid aspirate in my bone marrow... it is solid with the disease.  I have just finished my second round of chemo and I have done wonderfully well.  I have lots of energy on the two weeks off of chemo.  At first, I did not know how to feel.  Then I began to go places and do things that I always had done but I started thinking that I may not be here to do them anymore.  I have not been depressed at all.  I just adopted an attitude of gratitude to be able to wake up and see another beautiful day and enjoy my kids and grandkids.  I got to see my oldest grandchild graduate from college this past weekend and I went with my mask and blanket but by God I went!  S

 

I know how scary it is to go into this world that we never dreamed of being in, but like all the kind and generous people on here keep saying, you are not in this alone.  It seems that way sometimes in our own little world where everyone seems to be going about business as usual and though they want to help, they can not truly understand all of this, just as we couldn't before our diagnosis. 

My very best to you along the journey and I have already found that the people on this site are so helpful and kind and willing to be honest and open about their experiences.  It is so good to read about how others have fought and are fignting this disease.  I find that I pick up ideas and suggestions here that I pass along to my treatment team that can help with my outcome.  It is a learning experience every day. 

Please keep us posted.  I find that everyone's journey is different but we all come from the same place of healing. God bless!

 

Dianne

Francyn's picture
Francyn
Posts: 10
Joined: May 2016

Surgery went well (as well as surgery can go). The first lymph they took out didn't look abnormal enough so they went in deeper down to the pelvic bone and brought up another. Surgery lasted an hour longer than expected. But no side effects from anesthesia. Slept lots on Tuesday and Wednesday. Surprised there are no stitches in the 6" surgery spot. Still very tender getting up and down. Taking some prescription tylenol to help with discomfort and blood thinner for the next two weeks. Blood sugar numbers staying ok.  Trying to go to work today. I just started this job 6 weeks ago and don't want to lose it. Don't think I will but the sooner I get back to my routine, the better. I mostly sit at a desk and work on computer, so figured I'd try it. No hestiation leaving if I don't feel good. No results from biopsy yet. Supposed to call surgeon this afternoon.  Was really surprised I didn't get any instructions for caring for the wound. When OR nurse called, I asked. Said cold compress would be ok if it helps. Just watch for fever, oozing etc. Can't really see it unless I look in the mirror and pick up my tummy.  Foot and leg still swollen. Actually have gained 10 lbs from edema.  Thanks to all for the supportive comments and this opportunity to put down my thoughts. Fingers crossed for results that are treatable!

 

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

Glad teh surgery went well. I know what you mean about edema after surgery. I had a perforated bowel because of the tumor in my abdomen shrinking so much after the first chemo. My feet were so swollen that I could barely see my toes. The home nurse recommended my husband get a carton of egg whites and make scrambled eggs each morning. In 4 days I had toes again. A week later my legs and feet were normal looking.

As to working through treatments I did it. I too have a desk job where i work with computers. I am also able to work from home if I wasn't up to driving into work. So in a 15 work day treatment cycle I took the treatment day off, worked from home the next 5 work days and then went into the office the next 9 days. Unless I had a medical appt.  Bottom line - you have to figure out what works for you.  Good luck. 

 

Max Former Hodg...
Posts: 3699
Joined: May 2012

Please share when you know something....lots of new friends here, who have "Been there, done that."

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

Hi Francyn,

Hoping your first day back at work went well.  Your biopsy surgery sounds like it was in the same area as mine (lower abdomen).  It is amazing how they use a 'super glue' to close the incision.  The 'glue' will slowly disappear over the next several weeks.  My best pain medicine following the surgery was using ice packs for the first week following surgery.  It sounds like you do not have much pain from the procedure. You are very lucky!  Hoping for good news for you!  Once you receive the pathology report, do not hesitate to get several opinions on treatment (if treatment is needed).  Hoping your recovery from the biopsy continues to go well!

Mary

 

Francyn's picture
Francyn
Posts: 10
Joined: May 2016

First day back was OK. Standing and sitting is fine it's just the motion of going between them that is very painful.  When I came home I rested and tried ice packs. It helped quite a bit.  I thought the doctor would at least have some info for me but nothing yet. Waiting is hard, isn't it. 

Francyn's picture
Francyn
Posts: 10
Joined: May 2016

Got some news. Not lymphoma. Metastatic melanoma. Not sure where the melanoma is but have Brain MRI, PET scan, and sigmoidoscopy planned for the beginning of the week. Then meet with oncologist.  I guess I will need to change chat boards. Thanks for all well wishes and advice. 

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

Don't know much about that cancer but I wish you luck. I hope they are able to get you into remission quickly. 

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

Glad to hear the anxious waiting period is over and that you have more information.....and good to know more testing is scheduled so soon. Will keep you in my prayers for a great outcome and that this melanoma is completely treatable. Best of luck to you! 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

My best friend is a pediatric oncologist, when I was diagnosised she said I will feel much better after I decide on the treatment plan.  She was right.  You're that much closer....

I remember in the beginning I was so terrified, it's a daunting and scary journey but when the diagnosis became clear and treatment plan in place, things started to settle down and I started to breathe.  May the same true for you so you can treat this beast and reclaim your life.

 Good luck and blessings to you.

 

 

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