Dacogen affecting the lungs

[LuAnn]

My dad has had 2 cycles of Dacogen and I though I’d provide an update for everyone. Prior to the first set of shots, wbc and platelets in range and hgb 7.5 to 8.5. He was being xfused 1x/week. Approx. 2 weeks after the first cycle his counts bottomed out: wbc 500, platelets 6000 and hgb below 7. He developed high fever, chills and sweats. Wound up in hospital in isolation and experienced severe ear pain. Oncologist said it was not related. He also had severe diarrhea but tested negative for c-diff. While in the hospital he received daily xfusions and a few platelet xfusions and neupogen shots. After being in hospital for about 2 weeks he bounced back and was released. WBC and platelets bounced up to normal range and hgb up to 11.1. Has not been that high in years. He was great for the next 2 weeks and then the 2nd cycle began.

Three weeks later it started all over again however we were on the road traveling to Virginia to spend Christmas with my sister when the diarrhea hit. That nite his temp went up to 103.7. The next day, Christmas eve, he was admitted to the hospital in VA and once again put in isolation. Fever subsided quickly but the diarrhea lasted and he tested positive for c-diff. He had the ear pain again and the oncologist said it could be the Dacogen working, rebuilding the bone marrow. That made the pain more bearable knowing the medicine was working. His blood numbers bottomed out again (wbc 500, platelets 6, hgb 8) but bounced back quicker than the first time. He was released a week later and we were able to travel home. He has been feeling fine and hasn’t needed a xfusion in over 3 weeks which is awesome.

In VA they gave him a chest x-ray and noticed ‘something.’ We got results of a CT scan today and something is definitely there but they cannot diagnose it. He needs a PET scan.

Has anyone heard of a lung infection as a result of Dacogen treatment? His next (3rd) Dacogen treatment is on hold until he tests negative for c-diff and I’m hoping it’s not too long so as to affect the Dacogen cycles. Now I guess we will also have to see what’s going on in the lungs before next treatment also.

Sorry this is so long but I thought the detail was necessary. Good thoughts for everyone and if anyone has any info on lungs being affected, please share.

[jaxem]

luann
my only experience with dacogen is that it severly lowers the blood counts. as a result it is easy to contract lung diseases like pneumonia. my wife has gone through 3 episodes of lung infections including pneumonia over the 1 1/2 year she has been on vidaza & dacogen. usually the lungs fill with water and in increase in weight is likely. then treatment starts with antibiotics and lasix. my wife has gone through 2 rounds of vidaza, 6 rounds of dacogen by itself and just completed her 2nd round of 3 rounds of dacogen with valproic acid. her side effects have been contracting lung issues, GI tract issues and sluggishness. she sometimes develops 101-2 degree devers with once going to 105 degrees. she is now nursing a cold on top of that but we’re getting through it.

[Russ P.]

LuAnn,
Jack is right about the suppression of blood counts especially neutraphils that are needed to fight infections. C-diff and GI tract issues involved with Dacogen could be due to the normal intestinal flora getting out of whack. I started eating yogurt daily about halfway through my last Dacogen treatment. I believe it has helped so will keep it up. I looked for a brand with L. acidolphilus as it has been shown to be helpful in fighting diarrhea. I have no proof that it’s the answer but doc did not object and I can’t see any harm in it.
My prayers for all those going through this terrible disease.
Russ

[LuAnn]

THanks for the information. Dad was also told to eat yogurt. He’s doing better now we just have to wait and see what’s going on with his lungs. My prayers are with all of you.

[poppyshope]

Hello there i haven’t been on in a while, but came across your post. My dad had MDS and in the begining before he was diagnosed he had organized pnuemonia of the lower lobe of his right lung. At Sloane Kettering they removed the lower lobe of his lung thinking it was lung cancer- the infections was so bad it came up positive on the PET scan. Later when he was diagnosed they said that it was BOOP a fungal lung infection and he was put on vorconazol (sP?) among other many other drugs to keep infections at bay. It seems that this Dacogen can weaken the lungs because my dad had another spot that never quite cleared up but stayed the same size after he started the dacogen. The bronchoscopy and biopsys are the normal way of seeing that it is in fact fungal- at least that is what they did with my dad. Hope this helps- Jen

[LuAnn]

Thanks Jen. I’ll keep that in mind when we get all the results back.

[LuAnn]

Well my dad got the PET scan results and it seems there is a mass in the upper lobe of the lung. We’re meeting with the oncologist Monday and they are going to recommend a biopsy. Dad is weak so I’m concerned. However, after reading Jen’s post about the false positive result I’m concerned that may also be the case here. I wouldn’t want dad to go thru testing if it’s a false positive. I’ve very concerned and sad. I spoke to the dr. today and will tell my dad over the weekend before our dr. appointment. He was in the hospital getting a tx when I heard from the dr. I’m thinking of the words to tell him this new challenge but it’s hard to come up with them. Thanks for listening and if anyone has any advice on questions I should ask I’d appreciate your input. My prayers are with all on the forum.

[poppyshope]

LuAnn –
If you don’t mind me asking what hospital are you being treated in – i see you are from NY , as am I. If you are close to the city there are centers for excelence there- Memorial Sloan Kettering, Columbia Presbyterian, and Mt Sinai i think as well. A biopsy is risky with dealing with lung cancer- I remember Dr Rizk (at Sloan a thorastic sergeon) decided to just remove the lobe since he had more than adequate lung use, and it seemed contained (nothing in the media steinum was involved and no lymph nodes); rather than risk it spreading with a biopsy. Is a broncoscopy a possibility- especially since it was in the upper lobe. Also, there are 3 separate lobes on the right so to lose one not a biggie- the left side they are smaller due to the room for the heart. I remember them saying that that was the lung to have anything wrong with it if you had something wrong. I was so worried and it wasn’t lung cancer at all – in fact that led us to MDS dx. Try to stay calm, and get a second opinion always we did another hospital was going to biopsy and we went to sloan and got our second opinion first. Take Care will pray for you and dad- Jen

[poppyshope]

Also LuAnn, I remember that the reason his lung mass showed up positive on the PET scan was because the infection was so large (large enough to show up as a mass-because remember this is prior to MDS) it reacted with the gluclose that is given during the test that highlights cancer…when an infection is like this it will show a positive result. They were pretty sure it was lung cancer that is why no biopsy, but when the second spot (like a mass/pnuemonia) showed after the MDS diagnosis and after Dacogen they did biopsy and bronchoscopy, because they were certain it wasn’t cancer but this BOOP (fungal lung infection) and it was again PET positive.
Also, they loaded my dad with platlets and had a transfusion on standby, because counts were down from dacogen, and either procedure will cause bleeding. I hope it is just an infection!-jen

[LuAnn]

Thanks Jen.
This info is very helpful. All of our doctors are associated with Huntington Hospital on LI. We met with the oncologist yesterday and we discussed the options. While the PET was positive for lung cancer I told the dr your story and he said it could be possible. Since dad has so many issues he wants to involve all the specialists treating him and have a joint recommendation. We have a follow up meeting with him next week and he will have some direction for us. If the concensus is to have a biopsy we will need to look for a thorasic surgeon. While we have an appt. with one right here in Huntington, I’m not sure he is right for the job.

The oncologist is Dr. Akhund and we’re very happy with him. He is very cautious with dad and respects his overall conditions. We went to Sloan for a consult a while back but I have to say I was a little disappointed. It’s soooo big I didn’t feel we were treated as people rather just a number in a trial. I know they have great dr’s and a great track record but I don’t see a need to switch at this point. We’ll have to see what develops. I’ll let you know what happens after our appt next Wed. I too am praying for an infection. Thanks again!

[choijk]

LuAnn,
I am pulling for you and your family. Let us know what the results are.

[Sarah L]

Hi-I just now found these messages and they couldn’t be more timely! My dad (80 yrs) is currently in the hospital – has been since Monday with suspected pneumonia. He was diagnosed with MDS in Sept. 2007 and has had little luck with medication (I need to get the exact names of the medications he has tried) and is receiving transfusions about every 2 weeks. Reading your experiences has given me hope that he will pull through this. I will talk to him this afternoon to get the name of the last med he tried to see if it matches some of your experiences. Any advice is greatly appreciated!

[gj]

Hi Gang!

After several rounds of treatment with both Vidaza and Dacogen, I found myself in the hospital with an unspecified upper respiratory infection. Had the high fever which was knocked down with a few days of antibiotics. The chemo can lower your blood counts to the point that something comes in and wreck havoc with your system and makes live exciting for a while.
After about my 4th round I have avoided the hospital route but the treatments still know the _ _ _ _ out of my blood counts.
Wishing you all the best
gj

[LuAnn]

Hello everyone and thanks for your support. Dad’s case was reviewed at a cancer group meeting today and I believe all his specialists were there to weigh in with their opinion on next steps. We have a meeting with the thorasic surgeon tomorrow so hopefully he can shed some light on this for us. I was doing some research on effects of dacogen and the disclosure that comes with the med states the following:
 Infections and Infestations: fungal infection , sepsis, upper respiratory tract infection, bronchopulmonary aspergillosis,
 peridiverticular abscess, respiratory tract infection, pseudomonal lung infection , Mycobacterium avium complex infection.
 Respiratory, Thoracic and Mediastinal Disorders: dyspnea, hemoptysis, lung infiltration, pulmonary embolism, respiratory arrest,
 pulmonary mass .
Not sure what this all means but will ask oncologist office to call drug company for additional information if any.
I’ll let you know what happens at our dr. appt tomorrow. Thank you to all!

[californiamom]

Hello LuAnn,

I’ve just read your posts and I’m with Jen, the same thing happened with my dad. He started Dacogen, then got pneumonia and had a funal infection in his lungs. They put him on some treatment for the fungal infection, but it’s so potent you need to watch his kidneys and liver. Good luck with your appointment, I’m hoping it all turns out well.

Kirsten

[Author]

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