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Wheeze on chest

nickydog
Posts: 71
Joined: Nov 2010

My daughter was diagnosed with Hodgkin’s in July of 2010.  She had ABVD & Radiation which was all finished in August of 2011.  She has been fine and gave birth to a beautiful baby girl in December.  She went for her regular check-up yesterday and her doctor heard what she called a “wheeze” on her chest.  She had a large mass on her chest at the time of her diagnosis, and her doctor did tell her that she had scar tissue.  Ever since I heard this yesterday I have been worried sick. She will be having an xray.  She doesn’t feel anything else, but she does feel the wheeze when she is laid down.

I am wondering if anyone out there has ever experienced anything like this that has gone through the same thing as she did.  I cannot imagine her having to go through this again, the thoughts are consuming me and making me crazy. 

 

Rocquie's picture
Rocquie
Posts: 515
Joined: Mar 2013

I was first diagnosed with lymphoma because a chest xray showed a mass on my lung and I was sent for a CAT scan. The mass turned out to be a "pleural effusion"-- excess accumulated fluid. I had a procedure done where a needle was inserted through my back (painless) and the excess fluid was drawn out. Later testing on the fluid showed it to be completely benign and I've had no further trouble.

Good luck to your daughter,

Rocquie

 

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

I went for a routine checkup and my doctor heard wheezing or rattling in my lungs.  He sent me for a chest xray as I was previously treated for Hodgkins Disease.  Don't be alarmed but my chest xray was inconclusive for metastatic disease or pneumonia.  I had to wait a month and repeat the xray.  My lungs showed improvement so I had pnemonia.  Try not to worry though we all know that it is almost impossible.  Hopefully your daughter had a recent cold and her passage ways are still congested.

Good Luck to you and your daughter,

Cathy  HD 1989 - RADS   HD 1994 - ABVD   IDC - DBL MX

nickydog
Posts: 71
Joined: Nov 2010

Thanks

Where she is living the winter air is very dry and she did find this to bother her.  The doctor asked her if she had asthma.  Hopefully it is just from the dry winter air. 

po18guy
Posts: 242
Joined: Nov 2011

The "B" in ABVD is Bleomycin - technically an antibiotic, but more effective against cancer. It is well known for causing various athma and bronchitis-like symptoms that are called  "Bleo lung." She might contact the oncologist who treated her for a referral to a pulmonary specialist, if that is what it is. 

nickydog
Posts: 71
Joined: Nov 2010

Since she was treated for Hodgkin's she moved to Western Canada from Eastern Canada.  The air is very different there.  She has a new hemotologist there who has ordered a xray.  I am just do worried, she reassures me that she is feeling fine but the wheezing is there.  I am praying that it is nothing serious.  She will be moving back east again in May so hopefully that is all it is-the difference in the air.  Please God let everything be alright!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1199
Joined: May 2012

Po's response is the most promising lead you have gotten here.  Have her ask her oncologist about it possibly being a bleomycin side-effect.  Bleomycin causes lung toxicity in 10% of all users -- and it caused it in me big time.  The symptoms are not usually so delayed, but can be.  Episodes can also be triggered by receiving oxygen later in life, as during surgery. If she goes to a lung specialist, ask that doctor as well specifically if it could be bleomycin-related.  Bleomycin toxicity is not generally treatable.  Mine cleared after a few years, and I now breath nearly normally again. It is important at this point for her to get an accurate diagnosis, however.  It is recommended by some experts that bleomycine patients not receive high-dose oxygen therapy later in life, or during surgery

HL does not usually come back as lung disease, or indeed as present in any organ (it can, I am just saying that that is not the norm), so the wheezing probably does not immediately suggest that it is caused by a recurrence of lymphoma.

max

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Max,

You brought up a point that all patients treated with bleomycin must know and tell every surgeon and anesthesiologist.  Oxygen therapy may cause lung toxicity at any time after treatment.

Max all ready said it but you need to tell every doctor before any procedure about this.  Most of my subsequent surgeries the O2 saturation was the lowest possible ans sometimes they laid the tube on the pillow next to my nose!  Hopefully your oncologist has reminded you all of this.

Tell your loved ones and place this info in your wallet next to ICE (in case of emergency info).

Thanks Max,

Cathy

nickydog
Posts: 71
Joined: Nov 2010

Her xray is scheduled for tomorrow morning. I will post again when I hear more. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1199
Joined: May 2012

 

Cat,

I have read that some practices have former Bleomycin users wear a warning tag around their necks, precisely to warn EMS and others from giving too much O2. 

Bleomycin is actually an excellent cancer-fighter, and 90% or so do NOT get toxicity, but it is really impossible to predict who will or won't, although it does seem to affect older patients more often than the younger ones (I was 53 at the beginning of infusions, and I had prior lung damage from trauma).

max

sherry84
Posts: 16
Joined: Jan 2013

Max,

This is such important info to know and yet there are probably many of us out there who don't know about the oxygen/bleo connection.

I had bleo along with thiotepa, velban (TBV) and radiation back in 1984 (I was 26 then) for hodgkin's stage 2A. I always knew bleo was a "lung irritant" as the Dr put it. My schedule for the treatment was 2 months/chemo, 1 month radiation 4 tx's per week(16), then back to the 2 months on chemo. When I finished with the radiation, I ended up with pnuemonia and had to have the last 1/3 of my treatment delayed. At the time, the chemo onc said it was caused by the radiation while the radiation onc said it was from the bleo. I was given antibiotics and when I was given the all clear, continued on with the chemo but minus the bleo so ultimately, I only had 2 months worth. After, when I went into remission, I had issues with shortness of breath for at least a year and then it started to dissipate. Somewhere in the back of my mind, I always felt I would develop something lung related because of the bleo. Then, about '99, I started to have issues with shortness of breath. I mentioned these symptoms to my Onc Dr who didn't feel it was a real concern. Went to a local pulmonologist who also blew off my symptoms saying it was from my weight. (I'm maybe 25 lbs overweight at most) Then a year passed and I just had a gut feeling that rather then going back to the pulmonologist, I should have a cardiac treadmill stress test. No real reason other then my inner voice. After being practically laughed at by the internist (I hadn't even thought of going to the Onc Dr with this since I only saw her once a year) I had my test and it turned out positive. Wow, what a shock after going through many years thinking it would be my lungs that would be next in giving me grief. I called the Onc Dr that night who then told me it was the radiation treatment that affected my heart. Since then, I've had 4 caths, 1 angioplasty, 1 gyn surgery (unrelated) which resulted in a heart attack and heart failure, and in 2003, quad bypass and mechanical aortic valve. I know I have received oxygen numerous times and yet noone has ever discussed how precautions should be taken in light of the bleo I was given. It's amazing how we have to constantly do our own research and advocate loudly for ourselves. This site and everyone on it has been truly valuable. Thanks for letting me vent a bit since I've held all this in for so long.

So now I am developing some wheezing which is mild.  I had a PFT in september which didn't really show anything but I will be continuing to pursue it with many additional questions for the Dr.

Sherry

 

sherry84
Posts: 16
Joined: Jan 2013

Nickydog,

I hope all goes well for your daughter.

Sherry

nickydog
Posts: 71
Joined: Nov 2010

The results are in, and all is well! 

sherry84
Posts: 16
Joined: Jan 2013

I'm so glad to hear the good news.

allmost60's picture
allmost60
Posts: 3173
Joined: Jul 2010

Sooo glad the news was good! Now you can take a nice deep breath!

Much love to you and your daughter...Sue

(FNHL-2-3A-6/10-age 62)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1199
Joined: May 2012

Sherry,

It is almost comical, how differing doctors point the finger back-and-forth regarding side-effects. You would think that with them all being oncologists, there would be some sort of consensus among them.  In the abvd combination, there is another danger point: the Adriamycin (Doxorubicin) can cause failure of the muscles in the heart, although this reaction is very rare.  There is also in general increased danger from mixing chemotherapy with radiation therapy, but the benefits outweigh the dangers almost always, and in some cases using both cannot be avoided.

It is not always possible for a doctor or patient to "know" which part of their treatment caused subsequent side-effects.  I felt like I had the flu (severe muscle pain) nearly the whole six months that I was on r-abvd, but I will never "know" which med caused the pain, since three of them routinely cause flu like symptoms.  It could have been any one of them, or two, or even all three. Your terrible heart problems is possibly a similiar, unknowable situation.

You speak of doctors not knowing a lot of a patient's history or relevant medical facts (such as not restricting O2 to a Bleomycin recipient).  A close friend just got out of a month in the local, big hospital, which is also now a medical school.  As he was being discharged, his daughter asked the doc "what they had been doing for his stage 4 prostate cancer?"  None of the "hospitalists" who had been treating him even knew that he had cancer. It was nowhere on any of his charts, and he had been there as an inpatient a month.....

max

 

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