Any good support groups

[ellmp]

Hi all,

My 75 year old mother was diagnoses with AA about a month ago. After a reaction to horse ATG, she was put on rabbit ATG (10 days ago) and cyclosporine. She has had some mild infections (fever as high as 102.7) treated by antibiotics. Her wbc's are between 0.1-0.4 and platelets need to be given daily or she has dropped to 2k. with the platelets infusion she usually goes to 10-16k and on a good match high 30's. hemoglobin goes to the low 7 range and she gets blood almost daily. She has been in the hospital for 6 weeks. She is lethargic and even has trouble getting into a chair, She says she is too weak to raise her legs.She is getting headaches and as of yesterday getting pain on almost any touch (head,back). She says it's not worth it and wants to give up. My father is also a wreck. Showing up at the hospital at 4:30am and leaving at 8:00pm. They refuse to believe that it is possible to recover from this. They are both fighter and this surprises me. She is or was a young 75.
Are there family members of survivors out there that speak to others going through this? We live in NJ and she is getting good care. They just need to know that there is a light at the end of the tunnel.

[JEZ]

The first months of treatment were also very difficult for me. I felt so ill. When I did not respond to the treatment and continued to need transfusions I became very depressed and even hopeless. It took about 4 months before I could stop needing transfusions... I started feeling better and my bone marrow made cells slowly over the next 2 years until I finally had normal labs. I can empathize with your mom.... it sometimes does feel like dying and can be hard to see the light at the end of that long tunnel. Every one is different in their recovery... but do not give up. My sister sent me this poem that really sustained me thru the hard times:

Be Strong and Do Not Give Up

Remember, there is a deeper strength and an amazing abundance of peace available to you. Draw from this well; call on your faith to uphold you. You will make it through this time and find joy in life again. Be strong, and don't give up. I know you're going to make it, and my love and prayers are with you. (by Pamela Owens Renfro)

I now have so much joy in my life again and even tho I struggled terribly at first, it was worth it to be back and strong again.

JEZ

[Neil Cuadra]

You can find other patients here at Marrwoforums, ellmp, and also through the free Peer Support Network service of the Aplastic Anemia & MDS International Foundation (AA&MDSIF). Call 800-747-2820 and ask them to find others you can talk to, who have faced a similar situation. You, your mother, and even your father can take advantage of it.

My wife had ATG and cyclosporine and I remember when she couldn't stay up for more than a few minutes at a time. A low red cell count can leave you weak and exhausted, give you headaches, and turn even little tasks into big challenges, so it's easy to get discouraged. After her ATG my wife got gradually stronger and was able to do more and more. I hope your mother does the same. Having a bad reaction to horse ATG and then an infection were certainly setbacks, but perhaps this time the ATG will kick in. It's a treatment with a very good track record.

It's important to get treatment from doctors who are experienced with aplastic anemia. Is your mother being treated at the Cancer Institute of New Jersey? They have that kind of expertise.

Since well-matched platelets give your mother a better and presumably longer benefit, I suggest asking if the blood bank is making the appropriate efforts to find her good matches. Some centers are able to identify particular donors who are good matches for particular patients.

I hope you are able to be there to support your father for at least some of the long hours he's spending in the hospital with your mother. It's hard to maintain your optimism when things haven't gone well, so I hope that hearing from others who have traveled this road will help you and your parents regain a positive outlook.

[ellmp]

Thank you for your replies. I read all the literature about the 70% success rate and was very excited until I realized based on her numbers she is classified as Very severe AA. I thought severe was bad enough. I will continue to study everybody else's stories on the site

[Lisa V]

I agree that the first few months are the most difficult, even under the best of circumstances. The emotional adjustment to a diagnosis like this takes time, and the treatment is frustratingly slow in taking effect. It may be several months before your mother starts to see some solid improvement, but it is important not to give up too soon. ATG does have a good track record, but it is not an overnight miracle, and things may appear to get worse before they get better. This is not unusual, but in the meantime, the transfusions and antibiotics will buy her some time.

Another thing to keep in mind is the effect of all of the medications she's been given. Some of what she is feeling now may be attributable to that and not the AA itself. I assume she's getting Prednisone as part of the standard protocol. That drug in particular can make you very moody, irritable and irrational! Once that is tapered off, she may start to feel a bit more like her old self, even if she is still feeling tired from the low Hgb. Cyclosporine can also cause tremors and a host of other annoying side effects, so the level should be carefully monitored and tinkered with if need be. It seems like most of the people here have had to scale down their cyclo intake at some point, but they always seem to start it fairly high for maximum benefit.

It may seem overwhelming now, but there is light at the end of the tunnel. Our world crashed when my husband was first diagnosed and treated, but life has returned to normal now, and he's still going strong 5 years later.

[Gloria J]

I agree with all of the responses to your story thus far, especially the comments that the lousy way your Mom may be feeling is certainly due somewhat to the medications she is taking, and not necessarily the AA.

Post-ATg, she is probably taking more than just the cyclosporine. After my ATG, I was taking a blood pressure medication (because the Cyclo increased that) and Masgnesium (because the Cyclo decreased that), Prednisone (and we all know how that will make you feel), and something for the heartburn I felt from taking something like 30 pills a day.

It would take a page to list all of the side effects from those meds, and it wouldn't even take into account the AA symptoms.

What is most important, though, is that you all need to believe that her counts should slowly increase, and all of the extra meds will be decreased and/or discontinued, and the transfusions will become fewer and farther between. I hope that your Mom is feeling much better these days, and ready to enjoy the beautiful Fall in NJ. Please feel free to contact me if you'd like a sympathetic, or empathetic ear.