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Posts (92)

11 hours ago · Facing Cancer Recurrence, PTSD & Acknowledging Mental Health in Cancer: Managing Symptoms

I found I had less tolerance for meaningless small talk. I never did the why me question because I always really expected it, but I did struggle a bit until I was about 8 months in to treatment a doctor gave me some chemical help with that. I firmly believe in Zoloft being better living through chemistry now. I went off for a few years, but when my husbands bone cancer returned right away and had to return to Mayo for his second transplant, I went back on it. I try to be grateful for every day we have together and be mindful of the moment, but truthfully sometimes it is really hard. If antidepressants aren’t appropriate for people like us, I don’t know who they are. Because there is so many feelings and thoughts to process all the time. I find that scan time is the longest weeks of the year.

12 hours ago · Facing Cancer Recurrence, PTSD & Acknowledging Mental Health in Cancer: Managing Symptoms

If you need a friend, you know where to find me.

6 days ago · Protecting patient from getting infections from me & others in Caregivers

My husband has had two ASCT at Mayo, and had also had years of chemo. His bone marrow is very tired and we try to protect him in every way we can. That being said we had a little dog for years and we kept her bathed and healthy and there were never any issues. The children should be fine as long as they are well, just be mindful once they go back to school they are building immune systems by being exposed to many things. Making sure they are not coming directly from school, and don’t have signs of illness, my own policy is they have to be vaccinated but that is another discussion altogether. I also ask them to wash their hands well. Finding a balance that protects without being isolated requires a lot of thought, and there might be mishaps but there is no point to going through treatments if living stops. We had one major mishap and because my husbands bone marrow is so tired, it became serious, but we got through it. Make sure you have a good local doctor on board to help if you need it, and enjoy the life you get together as a result of these treatments. My husband masks up and goes to the high school foootball games, the ffa dinners, and any other events crowded with people. I make sure I keep hand sanitizer in his jacket pocket, and our cars and my purse, etc, etc, etc.

Sun, Sep 8 12:46pm · Multiple Myeloma in Blood Cancers & Disorders

There is a lot of good news here. There are many tools in the treatment box for Myeloma. There is a mixed blessing of the rising number of cases every year. I hate to think of more people getting it but it has also meant more research, and more new treatments. I read every new study and trial that I can get my hands on, usually from IMF. It gives me a lot of encouragement for Myeloma patients of today and in the future. The one piece of advice I would give mentally is never give an inch to this, if it takes an inch, take that inch back when you feel stronger, there will be times when you feel bad but there will also be a lot of times when you feel pretty good. When you feel good, do what you want to do to make you happy. The one piece of physical advice I would give is to buy stock in hand sanitizer, haha, it is everywhere, in the cars, in my purse, I slip it in his jacket, I get him to use it, and I use it everywhere, all the time. He also no longer shakes hands. You are in really good hands at Mayo!!

Fri, Sep 6 11:26am · Multiple Myeloma in Blood Cancers & Disorders

Good for you, that you are learning all you can. I really feel like the information is so crucial with this complicated disease. Have you gone to the IMF and requested the information pack yet? You can pick them up at Mayo too. Husband was told swimming and walking were really his only options for safe exercise but walking was the most beneficial. Transplant was hard for him but it is only one dose and when it is done, it is done and you have time to recover, he has had two with the second about a year after the first giving him a complete response. You can do this! We went to Rochester but I am sure it will be basically the same. If you are going to go, give me a tag and I will share my best tips. You can take what you like and discard any tips you don’t need. I hope you don’t mind, but you just landed on my prayer list. I would like to address the fatigue, I know it is hard now, and every body is different. That being said, my husband was very,very fatigued for a long time before he was diagnosed. If it was eating holes in all your bones it was pretty advanced like his was. He actually started feeling better after a while on the revlomid. The transplant knocked him down but then he actually started feeling better and better. The treatments can cause fatigue, but in his case at least, the lack of normal blood counts was the big driving factor for fatigue, the more the disease got under control, the less fatigue he felt. I will say that he is tired a lot now, but he is mid 70s, and still does quite a bit each day.

Mon, Sep 2 12:13pm · Facing Cancer Recurrence, PTSD & Acknowledging Mental Health in Cancer: Managing Symptoms

I always said we had post traumatic cancer disorder

Sun, Sep 1 12:12pm · Facing Cancer Recurrence, PTSD & Acknowledging Mental Health in Cancer: Managing Symptoms

I am glad your cancer stayed the same!! I am also glad you were willing to ask for a break when you needed it. I have had the unrelenting nausea and vomiting, and your body and mind just gets tired. My doctor found out about a cream they call magic four. It is made at a local compounding pharmacy. I asked the pharmacist once if he would share the information, he said yes just have a doctor or pharmacy call him. I do know that it worked and you can use as much as you need. You just rub it in to the skin and it really does help. Northwest compounding pharmacy #541-672-8399. It is a transdermal medicine that has several medicines in it. When I was sleeping on the bathroom floor for days because I was so sick and nothing worked, it did help. If not this, then I hope you find something else that helps. I am keeping you in my thoughts and hoping you get a chance to eat and feel good before you go back in for treatment.