Need to hear some other's experiences

General
1

Hello all- I was just diagnosed with Primary AL on June 1, after being sick with everything under the sun for probably 15 months for sure. Finally ended up in the hospital in May with pretty bad congestive heart failure on both sides , whereas a year before I had moderate diastolic dysfunction on the left side; my kidneys were down to 50% function- spilling lots of protein, probably worse now. A kidney biopsy yielded the amyloidosis diagnosis, and I was fortunate enough to start on velcade almost right away. I have completed 2 rounds, and the lambda light chains numbers has really, really dropped.

What I am so afraid of is that all these symptoms are showing up now and I never feel good anymore. Is this because the amyloidosis is getting worse? I am on my week off of the chemo, so I have not had it for 9 days and don't know why I can't breathe well, sleep well, digest well, I am swelling up at night, my skin itches and is somewhat rashy. I am miserable; have called my doctor and got meds but do you ever feel good again? Does this mean it's not working? Am I going to die? By the way, my heart was too damaged for a stem cell transplant and it feels worse than a month and a half ago. I am 55 and have a 6 year old daughter. I am so scared; I do not want to leave her and my other kids behind so soon. Thanks for sharing your experiences or advice.

2

Hello Mary,
I certainly understand the trepidation that you are feeling. The fact that your light chains have gone down is an indicator that the chemo is doing its job. The symptoms that you described are side effects of the meds and can usually be managed. The breathing issues are probably caused by the edema and it may be helpful to elevate the head of your bed a bit. Do you have any compression stockings? If not call the doctor and ask for them to write you an RX for them. They will help reduce the swelling in your lower legs and make it easier to move around. Depending on the extent of the swelling, you may want the thigh high type. Did they put you on lasix? Torsemide is a diuretic that works very well in amyloid patients. If you want to get a better understanding of the disease you should go to www.amyloidaware.com and watch the 10 minute video and read our informative booklet. While on the website, I suggest that you also check to see if there is a support group meeting near you. We always have an Amyloid expert as our speaker and they are happy to answer any and all questions. Getting to meet other patients can also boost your spirits immensely, especially when you see how well many of them are doing. There are several online groups in addition to this one that you can join. Join them all! The more patients you talk to, the more you will learn. We are all here to support each other and help however we can. I am a facilitator with the Amyloidosis Support Groups and have learned a lot since my diagnosis of localized Amyloidosis in 2006. I will help you in any way that I can. Should you decide to go to a Center of Excellence for a second opinion, I can help you with that as well. Give it some time and you will feel better. I know some patients that did not qualify for SCT to start with but a year or so later they were better and able to withstand the rigors of the SCT. It is also not the end of the world if you can’t have one…only 25% of patients qualify anyway. I know many patients that are doing well having had chemo only so try to relax as best as you can. The chemo IS working so that is a very good start!

Paula Schmitt
Amyloidosis Support Groups
www.amyloidosissupport.com

1 Like
3

Oh thank you so much- I just feel like I will never be myself again. I will look up some, because I just never have any feel good time any more and I don't know what to blame it on.

1 Like
4

I think the first year after diagnosis was the worst for me. It was not easy getting used to the effects of the drugs. I developed pleural effusions which made me short of breath a lot. I wore support stockings and elevated my feet when I could. I did not have SCT. For most of the 6 years that I took the drugs I somehow managed to work part time. You might check with your doctor on how to best manage your drug taking cycle, to perhaps give you a little break periodically. I got used to feeling just ok, never quite up to par. Now, four years since I stopped taking the drugs, everything is stabilized, nothing is worsening. I do feel like a normal though not peppy person. I will always have the cardiac diastolic dysfunction, so walking real fast or jogging or steep hiking is not in the picture for me. But I can walk on the flats at a normal pace for 2-3 miles. So hang on to your courage and be patient about letting the drugs do their therapy.

1 Like
5

Some of your symptoms were similar to mine. Things I learned after I was first diagnosed.

1) That I was allergic to lasix (that is a story in itself). I now know I am allergic to any sulfa based medicine. This is not common, but neither is amyloidosis. I developed a whole body rash. Seemed to be worse at bedtime. Felt like I was being pricked by thousands of needles. I saw a dermatologist and they made some recommendations, one prescription based (topical), the other off the shelf (also topical). My doctor also found an alternative diuretic, which I am now being weened off of. Once off the lasix, things eventually cleared up. But it took a while, probably due to kidney and liver involvement.

2) I could no longer take a hot shower. It felt great while I was showering, but afterwards I was miserable. I was told hot showers can dry you out. I quickly adjusted to tepid or cool showers, which actually felt great. If I did catch myself taking a warmer shower, towards the end I would make it cooler.

3) Aveno baths were recommended, but that wasn't for me. But I do shower with an Aveno body wash developed for dry/itchy skin.

4) I was also told citrus (acidic) fruits can also be an issue, especially if you have eczema. So keep citrus to a minimum.

5) Keep yourself well hydrated. You mentioned renal involvement so that is always a challenge. I know, my kidneys and liver are involved.

6) Don't ever touch a salt shaker again and start reading labels. I was told no more than 1,250 to 1,500 mg of sodium a day. According to the American Heart Association a 1/2 teaspoon of salt is 1,150 mg of sodium and a 3/4 teaspoon is 1,750 mg. You'll get plenty of sodium in the general foods you consume. Check the labels, it adds up quickly. Your family may complain at first, mine did, but they adjusted.

7) Chemotherapy will dry out your skin so avoid hot showers, citrus, use a moisturizer, stay properly hydrated (see all of the above).

Since I'm new here, I'm 56, first diagnosed in Aug 2013. Was treated, and now monitored, at the Hospital of Univ of Penn in Philadelphia. I've been through 3 cycles of CyBorD (Nov 2013 through Jan 2014), a SCT (Feb 2014) and then 2 cycles of follow-up Velcade (June-July 2014). My last Velcade treatment was in late July 2014. To date, the FLCs (I'm Kappa dominant) have stayed within acceptable ranges and I have both kidney and liver involvement. Still high levels of proteinuria. I have an appt coming up in a couple weeks and will be a basket case the week before and week after until I get the results. But things do get better.

Feel free to ask any questions about my experiences. Good luck to you in your journey.

6

Hi Mary my name is Kay : I had the same systems kidneys heart itching and digestive.my team hit it hard velcade,cytoxan & dexamethazone every week for a year and every other week for six months. It was tough but I made it ! I have been chemo free for 10 months. It takes at least a year got your organs. To start getting better. I have been to the Mayo clinic and Stanford . I strongly recommend you go to a big teaching center where they see this disease every day. It will save your life, good luck stave connected with is this group

7

Thank you I also can’t walk up hills flat is ok. I still itch maybe I can try getting off lasix again tried it one but had to go back on. Thank you for your info



SheSurvives said:

I think the first year after diagnosis was the worst for me. It was not easy getting used to the effects of the drugs. I developed pleural effusions which made me short of breath a lot. I wore support stockings and elevated my feet when I could. I did not have SCT. For most of the 6 years that I took the drugs I somehow managed to work part time. You might check with your doctor on how to best manage your drug taking cycle, to perhaps give you a little break periodically. I got used to feeling just ok, never quite up to par. Now, four years since I stopped taking the drugs, everything is stabilized, nothing is worsening. I do feel like a normal though not peppy person. I will always have the cardiac diastolic dysfunction, so walking real fast or jogging or steep hiking is not in the picture for me. But I can walk on the flats at a normal pace for 2-3 miles. So hang on to your courage and be patient about letting the drugs do their therapy.

8

On Thursday, I will see my cardiologist, who wonderfully and amazingly enough has worked with amyloid patients for years and is great. He figured out the right diuretic mix and it has worked well. I was super swelling up in August and was in the hospital for four days before this started working. Also my right arm just ballooned one day out of nowhere and that was one of the reasons I went to the hospital-- found out later I had a blood clot in my jugular. Now on xeralto (sp?) too, and experiencing some weird things. I am off balance, my feet and hands get very cold at times, and my body gets overheated sometimes even in cooler weather and sweat drops from my hair.

Yesterday, I tripped on too big shoes in church in front of everybody ( my husband and I are the pastors here) and fell flat on my chest and face. It hurt and shocked me, but the strange thing is that my hearing immediately cut to about 50% and then gradually came back. That happened (without the fall) two more times today. I still get the big purple spots that appear out of the blue (for about 15 months now) on my arm. I am still frightened, but I wish I would have checked the forum more often, as it is greatly comforting to me. Thanks all.

9

Good evening : I know how freighting it is . Please do your best to stay positive! You can do this, it’s not easy! As I said before I had cytoxin,velcade& dexamethasxon! I was very bad & my team hit it hard. Ask the questions , have a advocate with you! Very very important. My team was in conference with Boston, mayo & Stanford & I’m great full. If I can help please ask Kay

10

Thank you so very much, Kay. For some reason I did not get any notices since August and I wish now I had. I am very afraid that I can't handle a lot more and it really scares me.

11

Gosh Mary, I know that since you're a pastor that you have faith. There is an additional faith that you should hold on to, and that is in your healthcare team. That first year can be so scary and tough. I remember that as I was laying in an ICU bed, with all those wires and tubes connected to me, that I thought to myself that all those attending to me were skilled professionals who dearly wanted me to survive. This is a hard and frightening time for you, and you can endure whatever treatments you have to go through. But give yourself a break. You don't have to be Superwoman. No one expects you to do all the activities that you performed prior to this diagnosis. Let all the love and concern that's coming your way carry you through this.

12

Hi, MarybyGrace

Welcome back. You say that you haven't had notices since August ... notices from this board? We can help you with that if that's what you mean. Just say the word!


MarybyGrace said:

For some reason I did not get any notices since August and I wish now I had. I am very afraid that I can't handle a lot more and it really scares me.