Hello Julia, Welcome,
Yes we are all in the same boat here. At different stages of treatment. So there is always someone to blaze a trail for someone else.

How are you doing?

I have been in remission for a year. *Yay* And just got good news on my last BMB. And I hope and pray the same for you and others.

Blessings,
lily

Julia,
You will find this to be the most welcoming place to be with so many knowledgeable and caring people who will answer any and all of your questions. I wish you well . . .

Myra

Hi, Julia -

Welcome - I hope you will find the community here to be a great source of support and comfort!

Robin

Wow -- Julia -- you are what this group is all about -- helping others to make it through. We all know that feeling of being DXed with cancer -- it is like a death sentence. My first impression was -- let's just get this over with (I mean the dying). Please let us know what your treatments have been and how long ago, and perhaps your age if you want. Great to meet you -- dave PS -- I am a dog person too ... the last one I had was a beagle.

Welcome, Julia. I'm glad you've found this list of use. I just joined about a month ago. I'm still in treatment, one more consolidation session to go. I've found great encouragement here.

Wow, thanks, everyone! This group is so great - don't know what I'd do without it :)

My husband, David, just completed his second round of consolidation. During the six day treatment, his fever spiked twice and the usual blood cultures, chest xrays, etc. were taken, all of which were negative. We assumed that at the end of the treatment, we would be able to go home and come back to the hospital every other day for transfusions, etc. We also knew the importance of being vigilant about taking temperatures periodically. That said, we were shocked to learn that the doctors want David to stay in the hospital at least three weeks (or more) until his counts rise. They said that it is precautionary. When he arrived for the consolidation, his white count was low and the doctor said that it will probably take much longer for his counts to rise. This, coupled with the fact that this is his third round of chemo, means that we are facing a very long stay.

I have read through the threads and know that fevers are par for the course. My question is whether others have been told to remain in the hospital for such a long time while the counts rise. They have said that the danger of sespis is too dangerous for him to be released. We live less than one hour from the hospital, but they said that sespis can happen in a matter of hours and it is much too dangerous. We completely understand on an intellectual level, but it is really hard for him to feel well and to be facing such a long hospital stay.

As always, thanks for your advice.

Myra

Hi Myra
During my induction chemo I stayed in hospital for over 6 weeks mainly because my temperature was hovering close to the magic 38 degree,they would not even allow me day release and I live 10 minute drive to the hospital.I was never kept in for low blood counts only for temperature . I know how your husband feels.After my consolidation rounds I would rush to be released and go home but always requited readmittance due to temperature when my counts dived.Even having a few days at home is a release.
Stay strong and you never know he may recover better than expected and be allowed to go home.

I finished treatment (chemo only)in November 2011 and am still in remission.

Lisa

Oh, gosh, Myra - I am so bummed for you both that David is being compelled to stay in the hospital -- if for no other reason than I know what a number it can do on everybody's spirits to be isolated for such a long time! That said, I know that from a medical perspective, I sometimes feel less anxious when my Dad is in the hospital than when he is at home, given that I have confidence that he will be monitored closely there, and will be given the care he needs should something come up. We had one particularly tumultuous weekend this winter when he was TWICE taken by ambulance from Cape Cod to Boston for neutropenic fever and significant kidney/back pain (which called for a CT). Needless to say, it was pretty much a nightmare - and one of those times when we were wondering why on earth had they released him from the hospital when it was clear that he was in such a fragile state?! Ugh, this disease is so relentless...

Anyway, I wish I could offer you something more practical in terms of perspective or advice. One of the aspects of this experience that does surprise me a lot is how varied the protocols around patient care seem to be from hospital to hospital. I will be very interested to hear from others as to whether their doctors tend to be more conservative in their approach (as your David's seem to be), or more "flexible" in the way that we've seen them be at DF. I have no idea as to what is typical!

Anyway, all the best to you both. You are doing a wonderful job of caring for David, Myra.

Ok, Myra - just minutes after posting my response to you, I have a scary text from my Mom that she has taken my Dad to the hospital as he has significant vertigo this morning. He kind of pitched forward, I guess - though thankfully didn't fall - blood work shows no blasts but numbers are still flat (as they were on Wednesday, when he was seen at Dana Farber). The oncologist at Cape Cod Hospital might keep him there for his own safety, and is going to do a brain scan. I guess i am wishing now that they'd kept in the hospital on a precautionary basis! What a nightmare.

Robin

Myra,

Our protocol is all treatment as an in patient regardless how close you live to hospital. My induction was 35 days in isolation and 2nd round 29 days in a different hospital, they would have been happy to let me go until my counts dropped however they were following the protocol of original hospital where my transplant would take place so they advised they must follow their orders. It's a hard road being in for so long.

Robin

I hope your dad is ok

Myra, I hope David is feeling better by now and soon to be out of the hospital. Around here, Jay has been let out of the hospital on occasion when his counts are below the normal protocol for release, but only because we live within minutes from the hospital. But if he has a fever it means automatic re-admittance. No exceptions. I can so empathize with you and David about the long stays at the hospital. Jay has spent more days in than out over this past year.

As a side note, Jay's current status and update is this. He is on day 9 post transplant and the fevers started last night. He also has the dreaded mouth sores and so eating is difficult. He is being hooked up to TPN today for nutrition. They are giving him decent pain meds, so he will hopefully sleep through some of this rough period. He's quite the trooper.

All my best to David, and I pray that he gets to go home soon.

--Tina

Robin, Lisa, Planxty, Lisa and Tina,
Thanks so much for your words of encouragement. Late last night, our doctor came to see to say that David's transplant is scheduled for July 30. We were so excited to hear the news that the distress of staying in the hospital for an additional few weeks was slightly mitigated by the thought that we now have a definite plan of action. As you well know, we are both thrilled and scared at the same time. Thanks for your support. It means so much to me.

Tina, please continue to keep us posted on Jay's progress. He is in my daily prayers, as is everyone else on this site.

Myra

I had pneumonia and fever after my second consolidation round in April, and stayed in the hospital 8 days. There were five days between the consolidation round and the emergency stay--the pneumonia and fever began at home, I got it from my wife's cough. They do want to be very careful with temperatures. I just finished round 4 of consolidation yesterday (last round, let's hope!) and my doctor wants me still to watch temp very carefully.

Myra, So sorry to hear David is having to stay. I too was in the hospital for long periods of time. Mostly due to the low cell counts. I was neutropenic for most of the six months of treatment. I kept telling myself that, This too shall pass". And it has. I have been in remission for over a year. The important part, is that he is where they can take care of him.
Blessings,

lily