[LuAnn]

Hello everyone,
Well here’s the update on my dad. The cancer group of docs at the hospital reviewed my dad’s case and determined that they needed a biopsy to diagnose him for treatment. They wanted to start conservatively so the decision was a broncoscopy. While this is a non-event procedure for most of us, for him there was a risk of collaped lung or excessive bleeding. We were all very nervous but knew it needed to be performed. Well the procedure was set for this Monday, Feb. 25th. We went for pre-surgery testing at the hospital this past Thursday. His dr. called me Thurs nite and told me he reviewed the x-ray taken that day and he could not find the spot on the lung. He wanted my dad to have a CT Scan Friday morning to see what was going on. Well, the spot on the lung was so diminished there is no need to have the broncoscopy! He sais it was probably a pneumonia and we only need to follow up in a few months. Last nite was the first restful nite sleep i have had since this began January 11th. I always thought it was either the dacogen or a pneumonia but no doc agreed with me. The surgeon we went to told us he was 98% sure it was lung cancer. Very scary. Glad he was wrong. One thing I learned is to believe your heart and never give in to negative thoughts. There’s always hope.

[LuAnn]

Hi Marlene,
I don’t have dad’s counts readily available but I believe the criteris is greater than 1.5 for creatnine. They take him off the exjade for a month or two until the level goes down to 1.2 or 1.3. It’s takes a while to go up but he is monitored monthly. We found that when the createnine is high, the lasix doesn’t work as well to release the excess water so that’s another issue we need to monitor. He has conjestive heart failure so we need to monitor the water weight he carries. The doctor’s office does a great job managing his condition and tries to balance it all. Hope this helps.

[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!

[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!

[LuAnn]

Dear Katie,
I’m so sorry for your loss. I’ve been following your posts and could see the strength you have to help your dad through this. I agree with you that he is now at peace and my hope is that you too can find peace. My prayers are with you and your family.

[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.

[LuAnn]

Hi Marlene, My dad has been on Exjade for a few years now and the dr. has always monitored his kidney and live function levels. They are taken once a month and if too high, he is taken off the Exjade until his Creatinine and BUN #s become norma. His FE is over 5000 and they try to get it down to below 3. Unfortunately, the Dacogen he is also on affects the kidney and liver function so that is also taken into consideration. It’s like a catch 22. Thanks for sharing this with us.

[LuAnn]

Thanks Jack. This is very helpful and I’ll review with the doctor.

[LuAnn]

Hi Katie,
I just read thru everything you and your dad have been going through. It’s so much for one person to go through, your dad is very strong. My prayers are with you.

[LuAnn]

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

[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.

[LuAnn]

Hi Mary,
My dad also had 2 cycles of Dacogen and he experienced ear pain about 2 to 3 weeks after the shots. At first his oncologist said it was not related however another oncologist said it could be the Dacogen working. Since it builds the bone marrow she thinks it may be the result of the Dacogen working. There is no proof however but it seems logical. Did your husband have to go to the hospital as a result of the Dacogen? My dad had to go after each cycle, approx. 2 weeks later. Very high fever, fatigue, weakness, and no wbc or platelets. The first time he was in the hospital for over 2 weeks. The second time for 1 week. He developed c-diff and now has to wait for a negative specimen before they resume the Dacogen. Last time he was in the hospital they took a check x-ray and it showed ‘something’ but it was not clear. We just got CT scan results today and there is something there, or something going on as the dr. said, but he doesn’t know what. He has to go for a PET scan. Have you heard about any affect on the lungs? I hope it’s not serious where they have to stop the Dacogen cause once dad is recovered from the hospital stay he is happy, stronger and xfusions are less frequent. How is your husband responding to Dacogen re: blood levels? I hope they can pre-treat him for back pain before next cycle. Good luck.

[LuAnn]

Hi Dick,
Glad you had such a good response. My dad is also on Dacogen but has had severe reactions within 2 weeks of treatment. His counts were wiped out and he had to be hospitalized with xfusions daily for a week. However a week after release his numbers went up and he got more energy. However he was ready for his second cycle and was hospitalized a 2nd time. He is just about ready for his 3rd cycle and we are hoping no hospital this time. Good luck and keep us informed.

[LuAnn]

Thank you for the info Russ. Dad is having final treatment of first round tomorrow. HGB went from 9.1 Monday to 8.4 Wed. He will probably need 2 units on Sat. Platelets went up which surprised me because I was told they would go down. I hope this works for both you and mydad with little side effects. Many prayers… LuAnn…

[LuAnn]

Thanks Jack. I’m not sure of the dosage but it seems pretty common that drs. dispense in office over 5 straight days. My dad’s doc has 3 other patients on same regimen and I’ve read that based on trials this is the most effective dosing of the med. I hope it works. So far he is doing OK. We were told his counts would drop very low after the first treatment and if so, the dosage may be adjusted. Hopefully I’ll have some good news to post as a result of this drug. Stay well.

[Author]

Posts