[Neil]

Is a trip to The Mayo Clinic a possibility?
David Steensma is located there. He is one of the best MDS docs in the country. As a rule it would be a one day consultation using existing BMB and other current results.
Could be worth a phone call 507-538-0107

[Neil]

Hi Dick,
A great idea!
A few years ago Bob Carroll organized a large number of high schools in Connecticut to become volunteers at blood drives. As the kids became older they became donors. Bob was responsible for obtaining many thousands of donors.
When my kids ask what I want for a birthday or Christmas I usually tell them to donate blood or register as a stem cell donor.

[Neil]

HI Roseanneinia
Sorry we got off your thread. Hope the earlier messages gave you some food for thought. As a rule patients with RARS can be treated successfully over time.
Do you think Zythromax might be Azithromycin? An antibiotic that is taken over 5 days. 2 tablets on day 1 and 1 on the next 4.
I have had very good success with it for sinus infections. But there have been times when I had to take 2 sessions about a week or two apart. Not sure what the implications of the other 2 drugs might be.
The first thing my hemo/onc does when I arrive is to get a CBC. He never sees me without knowing my counts.
Whenever I get platelets or RBCs Benedryl and Tylenol (pills)are given first to avoid any reactions. When I get Cetuximab they start off with a bag of Benedryl.
It might be necessary to give them a reminder. Sometimes there is a lot going on and easy to forget.

[Neil]

Hi Bety,
I use a saline nasal spray, but I tend to stay away from decongestants. They dry me up too much thus the cracking.
I also picked up a Holmes “humidifier” at Sears. It has 3 speeds, the slowest is almost silent and puts out a subtle amount of moisture. I use the high speeds when I’m not in the room.
I also get relief by putting hot water in the sink and breathe in the moisture through a wash cloth. Its a crude method but effective short term.

[Neil]

Hi Bety,
Used lots of tissue, kept my head tipped back, breathed in through my nose out my mouth and put a cloth filled with ice chips next to my nostrils.
This was not a severe bleed. Just took time to clot up. Did not use any Nosebleed QR.
Still have traces of blood when blowing and cough up a few clots.
I can expect this to occur every Dec-Jan when the humidity goes down. Have been keeping the humidity at about 40% unless the outside temp goes way down. Then just keep the bedroom at about 40%.
I also get lots of relief when taking a hot shower. Have to be careful I dont stay in too long.
Would be very very careful with my approach. Believe your husband is much more sensitive to bleeds and needs more professional help than I.

[Neil]

The series of events your Dad experienced is beyond belief.
Am not certain what hospital he has been in, but I am uncomfortable with his treatment.
It may be time to have a very long and pointed discussion with his hemotologist and develop a very clear understanding what you/he can expect in the future.
For example—last Sunday at about 4AM I developed a nosebleed. It took me till 8:30 to get it under control. Since it was stopped and was early Sunday AM I did not call in.
On Mon AM I went in for my radiation treatment. At that time I spoke to one of the radiation oncology nurses and filled her in on the bleed. On Tue I saw my hemo/onc and he was full of questions about the event. On Thur I saw my Radiation oncologist. He was up to speed. Both my throat therapist and physical therapist were aware of my situation. I have 6 docs and 9 nurses or technicians tending to me. They were all up to speed. I was totally amazed. It seems I can’t burp without all of them becoming aware.
At one point you mentioned he was on Procrit and it did not work. Did they suggest Aranesp? Much like Procrit but lasts longer and works on some where Procrit does not. It is also a good idea to know his erythropoietin and iron levels. If epo is normal to high chances are Procrit/Aranesp wont work. If normal to low if may very well increase reds. Both of them need iron to function. If iron is low chances are neither will work till his iron stores are normal.
There is no way he should be subjected to this kind of treatment. Its time to get them serious about how they are going to handle him or you may want to speak to some other docs. A second opinion would not hurt and a different attitude would be refreshing. It might be possible they are over their head. If so get him to a facility that is more knowledgeable/qualified

[Neil]

Hi deb,
Would be inclined to be looking for a cause that could be triggering the fever not related to MDS.
Note you are in Florida. Do you think it possible that mold associated with higher humidity might be the cause? It could be triggered by different issues. Might be that he should see an internist to track down the fever situation.
I very rarely have a fever, but my hemo/onc always mentions he wants me to contact him in the event I have a fever over 100.

[Neil]

Hi Deb,
Have never had a fever after a BMB.
Has he discussed with his doc?
What is his temp?
What is his “normal” temp. (ie mine is 97.6-97.8)
Tried Tylenol?
Any redness around the BMB site?
How long has he had the fever?
How long did it last the last time?

[Neil]

Have a couple suggestion to make TX easier. This reduces any reaction potential
Have the doc write an order for Tylenol and Benedryl to be administered before the TX.
Hold his arm under hot water (as hot as he can tolerate) for a few minutes, wrap it in a towel and go directly to the TX lounge to get stuck. The hot water makes the vessel “pop” and inserting the needle is much easier,

[Neil]

Hi bety,
The skin lesions I had were a result of sun damage. Both docs feel there was no connection with my MDS—but stranger things had happened. Don’t thing either would say catagorically no.

[Neil]

Hi Suzanne,
Have you researched cord blood transplants? The Univ of Minnesota Hospital has been finding some good results (don’t have stats). Quite a few patients have been gathering info on them.
HAve a friend with secondary MDS who has been gathering info and getting more and more encouraged by their progress.

[Neil]

Hi Jim,
Its good to hear from you! It been a while. Thanks for the prayers! Got out today for the first time–breakfast with family & friends. Felt good.
I tune up my PC periodically. Over the last year I added an external hard drive, more RAM, new DVD recorder, router , print server and installed a new PCI card to provide more USB ports. After putting in the new PCI card the machine was much faster. Seemed to improve more than the addtl RAM.

[Neil]

You have no idea how good it is to be home. Just have to keep from overdoing it. My kids, sons in law and daughter in law are constantly on my back to take things easy. 5 days in the hospital is enough. The hospital experience was difficult, but the nursing staff, hospitalist docs and my surgeon were great. They really piled on the care and made me as comfortable as possible.
Had an Aranesp injection this AM and a CBC. Counts are about what I expected. HGB a bit low, but the Aranesp will take care of that
Is also great to hear from Suzanne again. We have you in our prayers to keep your 5q- cells under control.
Suzanne & Zoe,
Don’t look for trouble from me. Learned a long time ago that I was a lover not a fighter.

[Neil]

Thank you all for all the kind words and prayers. Your thoughts are appreciated.
Am back home and more comfortable than the hospital setting. Will take a few weeks to get my strength back up.
Have to visit the doc tomorrow for an Aranesp injection. Then get the sutures out Thur.
Again, thanks for the prayers.

[Neil]

Hi Mary,
The first Squamus cell was found when I went in to have a dermatologist remove some pre cancerous lesions with liquid nitrogen. It was a larger spot than the pre-cancerous. When the dermo biopsied it , it was necrotic. I could touch it and it was wet. The parotid and lymph nodes were apparently a result of the orig spot metastisizing. The pathology report came thru a while ago. The parotid is squamus cell and he removed 34 lumph nodes, 27 of which were squamus cell. After the incision heals I will get a PET Scan to determine if there are any more cancerous cells forming at a cellular level then radiation 5 days a week for 8 weeks to kill off any possible cancer cells that might be forming.
Apparently this is a result of excessive sun exposure I experience in the 1940s and 1950s. No obvious relationship to MDS. expect to be learning more as time passes.

[Author]

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