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Kellie75
Posts: 17
Joined: Sep 2017

Well I'm sure just like everyone else here you never expected to be here. Prayers go out to each of you. I have a few questions. My 24 year old daughter had swollen lymph nodes couple months back. She went to her PCP who thought was infection and put her on antibiotics. She is a single mom of a year and half year old and works full time. She was taking the medication. She was also complaining she was tired all the time, couldn't sleep, was very depressed. PCP also diagnosed her with depression and put her on meds for that. In meantime we also found out she was pregnant. Started going to a gyno etc. Well the antibiotics didn't help her neck and she developed this bad cough. Her neck started swelling more and she decided to goto ER. They did a chest x-ray and blood work. They had a surgeon come in and said he needed to do a biopsy on her lymph node in neck. He suspected lymphoma. She had that done on Monday and we're currently waiting on results. I'm just sick cause I don't know what to do for her. They found lymph nodes swollen on both sides of neck and under both armpits. They also believe she has a mass in chest. They are limited on tests they can run because she's pregnant. Has anyone on here went thru a similar situation? If so what can we expect? She's supposed to find out sex of baby on Monday. She's in her 2nd trimester. She's also coughing so much that it's hard for her to breathe. The Dr gave her a inhaler but it's doing nothing. I have asthma so I have a machine that I have been letting her use but it seems like that's not helping as much. Any suggestions or ideas would be great. I'm just a scared Mom and Mimi.

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

Hi Kellie75,

Most often such symptoms indicate something not serious like an infection. But you can only wait for the result of the biopsy.

Lymphoma can often be cured. I got it in 2012 at the age of 68. I was cured and it has not come back. I am fine now.

I wish you and your daughter good luck!

Sten

Kellie75
Posts: 17
Joined: Sep 2017

The surgern just called back with biopsy results. She definitely has hodgins lymphoma. He's calling an oncologist to see if they'll take her due to pregnancy. He said if not she'd have to go-to a doctor at magee in Pittsburgh. So now what all should we expect to happen from this point?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3311
Joined: May 2012

I'm sorry that you and your daughter are in this terrible situation, Kellie.  It is complicated by the pregnancy.

Hodgkins-type Lymphoma ("HL") consists of 5 types. Just for information, there are over 60 identifiied variations of Non-Hodgkin's Lymphoma (NHL). Four of the five Hodgkin's  types are very similiar, and all are referred to as "Classic Hodgkin's Lymphomas, or CLh.  One other type of HL is very rare and not often encountered.

Most HLs are not terribly aggressive, and almost all are fairly easily put in to remission.

Many chemo drugs are harmful to a fetus, but not all.  Assuming she wishes to protect and keep the child, she would do well to seek out an oncologist with experience in treating pregnant patients.  A few month's delay in treating Lymphoma is often not very harmful, but only an oncologist can assess her particular case.

I am speculating but I would guess that there are chemotherapy drugs that could slow down or begin to treat her disease until she delivered, and then more aggressive treatments could begin if necessary. But this is a guess on my part. I recommend she she see a specialist soon,

max

 

Kellie75
Posts: 17
Joined: Sep 2017

Thanks for your response max. The surgeon said she's going to have to go-to magee hospital in Pittsburgh. They specialize in pregnancy. I'm assuming there's also an oncologist there as well but waiting for them to call us. She just has this horrible cough that won't stop. It's hard for her to breathe. Nothing I've tried seems to help. Have you experienced this? If so does anything help? 

ashsaj
Posts: 23
Joined: Sep 2017

Hi Kellie,
I am sorry you are going through this. i understand its very hard. I hope and pray she gets well soon. 
My father has been diagnosed of Non Hodgkins lymphoma recently. He has had this cough that won't stop. We tried everything - Hydrallin syrup helps a bit . If its possible or advised by her medical team - do perform a chest xray , my father has had pleural effusion and the mediastinal tumor was causing this irritation in lungs. Alhamdulillah, the cough is alot better after first chemo session. 
Things we tried before that helps us a bit are Honey, and Hydrallin Syrup.
Best Regards
Ayesha Sajjad 

Kellie75
Posts: 17
Joined: Sep 2017

Thank you Ayesha. Prayers for your father as well. This cough is horrible. She hasn't slept much at all. She did have x-rays at the hospital when she was in ER. There is a mass in chest they said that's causing cough. But they can't do much until she goes to oncologist. We're waiting on them to call for appointment. This waiting for everything sucks. I feel so helpless. 

Kellie75
Posts: 17
Joined: Sep 2017

The oncologist called us yesterday. She said to take her to shadyside hospital in Pittsburgh where they were probably going to admit her with everything going on. Once we got there, they started running bunch of tests in ER. They found fluid buildup around her heart and in lungs. They put a drain in her to drain fluid and put her in ICU. She had very bad night. Heart Dr came in at 630 this morning and said she's still very symptomatic and keeping her in ICU. Oncologist supposed to be coming in here soon. Is this all normal with lymphoma?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3311
Joined: May 2012

There really is no 'normal' with Lymphoma, Kellie.  But what she is experiencing is very uncommon.  Most people present with a new diagnosis following the discovery of a node or two that won't go away over time.  

Life-threatening occurences like your daughter's fluid build-up are rare.  I discoved my Lymphoma similiarly, however, admitted to a chest pain center where I had been sent from an area hospital. The ER doc thought I was in unstable angina, or having a heart attack.   My heart was fine; the pain was from massive nodes squeezing my heart cavity.

Lymphoma often causes 'drainage' issues.  The doctors will figure her out. She is in the right place -- admitted to a hospital.  Lymphoma, as we have written, is usually quite curable.  With cure ordinarily comes the end of bizarre side-effects.   We are all pulling for her with you here,

max

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

So sorry to see you and you daughter and her unborn child facing all this. You are in our thoughts and prayers. Please keep us updated. 

Sandy Ray

ashsaj
Posts: 23
Joined: Sep 2017

Hi Kellie, 
I know what you have been going through - my father has tumor in chest cavity as well, it has spread and is pressing his food pipe and heart - also effecting lungs causing pleural effusion. ECG patters can also be effected, so dont panic. This fluid is quiet normal and easily treatable, so don't worry too much and hang in there. 
have they done her biopsy yet? Do they know the type of lymphoma ? 
Do keep us posted. 

Best Regards,

Ayesha Sajjad

Kellie75
Posts: 17
Joined: Sep 2017

Thanks everyone. The hospital she is at is waiting for slides to see exactly what they are dealing with. The surgeon who did biopsy told us she has hodgins lymphoma. I am having slides sent to the hospital. They are doing a sonogram on her heart this am to see if all the fluid is gone. The oncologist told us yesterday because of mass in chest and both sides of neck she's at least at stage 2. Because of pregnancy they haven't gotten to do more scans to see if she has any nodes from stomach down. After drain is taken out they can do a MRI and actually see if there are more masses. Regardless at this point, Dr said she needs chemotherapy. They talked to us about aborting the baby so they can treat my daughter. They said it's up to her on what she wants to do. They could treat her with less medication to try to keep it at Bay to possibly get her to term but they unsure on how it could effect baby. So she's had alot to think about. This whole thing is just a mess and it's just beginning.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3311
Joined: May 2012

You need more info to make an informed decision here. At least the exact strain of the HL, which will tell the doctor about aggressivity.  That should be available to you by NOW, given the emergency nature of what you have been facing.   Demand a PAPER COPY of the biopsy/pathology report for future reference.

MRI and ultrasounds are (I'm pretty sure) safe for a fetus, and could be done in lieu of CT/PET for now.

The fetal/placental blood supply is essentially independent of the maternal.   You said yo had a ppregnancy oncologist assisting. He should be telling you all of this, not me, although I am delighted to be of assistance insofar as possible.  Get in the pregnancy oncologist's face and demand a little clarity regarding what is and is not possible.  You may need to get a little more demanding with them,

max

yesyes2
Posts: 590
Joined: Jul 2009

One of my FB friends has a sister who was diagnosed with NHL during her pregnancy.  Her diagnosis was DLBC, which is aggressive.  She was treated with CHOP I believe, but am unsure.  Don't know if she received rituxan.  I believe it was a reduced dose.  When the baby was fully formed she was induced and delievered a totally fine newborn.  He is several years old now and totally adorable and fine.  She completed chemo and is in remission.  Just letting you know that there can be happy endings.

I am in complete agreement with what Max is suggesting.  You need clarification from the Pregnancy Oncologist.  Your daughter and her baby deserve to get full information and the very newist and latest available care.

Know that all of us here are hoping for the very best.  And I am so sorry youe and your family are having so very much to deal with.

Leslie

Kellie75
Posts: 17
Joined: Sep 2017

Daughter is finally back home. There are still so many unanswered questions. The doctors at magee(they specialize in pregnancy) are also agreeing about terminating. They said she's a very high risk due to the other problems the cancer is causing. I'm still unsure what type of hodgins she has. The pathology report hasn't gotten back to them yet. They took the drain out yesterday. She's still coughing like rediclous. Only thing for sure we know is they said they'd be giving her chemo every 2 wks for 12 wks. Idk what kind. After she goes back to magee again on Monday and Tuesday they are supposed to set up her appointment for chemo. 

Lixx's picture
Lixx
Posts: 21
Joined: Sep 2017

Kelly so sorry you are going through this and I hope you get answers about your daughters diagnosis soon. Definitely stay on top of those doctors!

lindary's picture
lindary
Posts: 658
Joined: Mar 2015

I had no problems with coughing but did have trouble breathing which my PCP at first thought it was because my thyroid was way off. When I went for my first CT they noticed fluid aorund the lung. It was plerisy because my lymph system wasn't working right. I had a drain for almost 4 months, they wanted to make sure the lymphoma was under control before they took it out. 

All you can do is make sure you tell your Drs any problems you are having. 

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