Hi, Lauren -

I am so sorry to know that your husband is feeling such despair about his situation. One of the things that we've found through our family's experience with AML is that when things are tough, it is hard to imagine that they'd ever been otherwise, and when the situation is better, it seems like it that might last indefinitely, too. It is just so exhausting when our emotions swing so wildly from one place to the next. Hope, despair, then back once more to hope...

Does your husband's hospital have a social worker who might visit with you both? I do know that for many people, the sense of being alone with worry can be very debilitating. It can be difficult in the extreme to maintain any sense of perspective when we are feeling isolated and unwell. There is no getting around the fact that the treatment for AML can bring a whole array of difficult side effects - it sounds like your husband has really been battered by this experience, and for that, I could not be more sorry.

If your husband completed a course of chemo just a week ago, it is actually quite expected that he'd be hitting a "low" point right about now -- which is exactly what his doctors want to see happen, and very much the point of going after those blasts in such an aggressive way. Many on these boards have reported going through some very dark days in the midst of their treatment, only to have emerged on the other end, cancer free, and ready to begin their lives again with a return to good health. We pray this will be true for your husband, too. Hang in there, Lauren.

Robin

Lauren,

I am so sorry you two have to endure all that you are going through. I know my med team recommended upon diagnosis an anti depressant-celexa and anti anxiety-klonapin meds. This was standard practice where I'm treated. I realize not everyone needs these meds but I know they helped me cope and rest. Just my perspective-hope it is helpful.

Julie

Yes, this is normal for one week past treatment. Those of us who have been through it know how debilitating it can be and also how discouraging. The solution is patience and just pure raw endurance. For sure in about a week or so he will start feeling better when his numbers get back up closer to normal. At this point he needs to be kept isolated -- adding an infection to the mix right now would not be at all good -- so please follow their directions for wearing a mask and staying away from people. These days are particularly depressing -- the numbers will come back up, but it always seems like its never going to happen. Please let him know that it is normal, even being depressed, which is worse than the physical pains and side effects. But it should only be a temporary thing and he can look forward to recovering from this round. Perhaps they will let him go home for a few days between rounds -- I think I got to do that. Music was always a comfort to me -- perhaps get him an iPod and put some of his favorites on it with some earphones because his ears could be tender -- ear plugs/pieces are not recommended at this point. Be sure to take care of yourself -- dave

Lauran - so sorry to hear this.
And as all said, it's quite normal. Since with AML usually there's little or no time between diagnosis and start of treatment, we go through the physical difficulties of chemo together with dealing with the emotional and psychological of the disease, and often this all happens while we are hospitalized, have no immune system, are often in isolation and cope with side effects. No fun...

One of the nurses in the hospital where I was treated told me she thought each patient should be immediately started on anti depressants (also since they take a while to work). It wasn't the case where I was (and I do think they would have made it easier for me).

We did have a fabulous social worker, and this helped me a lot.

It sounds like he feels he isn't getting all the information. As someone who likes to know everything, I can see how that can add to the anxiety, fear and depression. Not sure how, but I think that for him having the medical staff speak to him and give him the feeling all his questions are answered, can help (if he is like me. I asked a ton of questions. Also, in those situations, we tend to ask everything we want to know. We don't ask what we don't want to know. I think wise doctors listen to how much the patient wants to know).

For you, just know this is ok. As long as he keeps his determination to go through this all, know that he will have high and lows, and that most of what he probably needs from you is to be there.

Good luck,
Abby

Lauren,

It is sometimes so difficult to keep one's eyes riveted on the horizon of good health when you feel as exhausted as a rag doll, having non-stop diarrhea, nausea and the rest of the horrid symptoms that go along with treatment. It can also be frustrating for loved ones to see that, and to feel so helpless in getting the patient to realize that things will get better -- much better. Although my memories are getting fainter and fainter, I still remember sending my sister out for diapers for me, sitting on the toilet in agony and saying "God Help Me!", hoping that the next day would be better, and wondering whether I would ever have a life again. The isolation and boredom didn't help either. Nevertheless, the fog did clear and I am now well. Do not let your husband sink into depression about this. When I felt my most wretched, I asked to have a psychiatrist see me, I started to avail myself of some of the ancillary services, like art and music therapy. Those efforts were in ways more beneficial than seeing the sad and worried faces of my wife, children, and sister. I know that they tried, but it was so easy to read their anxieties. What you can do is be there for your husband. Don't get frustrated by his depression. Don't look worried. Don't feel defeated if your efforts are unsuccessful. When he begins to improve, and he will, you will see a major change in his mood.

Lauren, your love and concern for your husband is so obvious. Let the love shine through and keep YOUR anxieties in check. I promise you that you will get your husband back again....with a new appreciation of you and life....and, believe it or not, a smile on his face. If you CANNOT believe this now, you will.

A big hug coming your way. Pass it on.

Cliff

The social worker is visiting but does not seem to be helping.

I think a big part of this is he developed a myeloid sarcoma on his spine which has paralysed him. He has no control over his own bowels, bladder or use of his legs. This happened very suddenly. One day he was ok the next his legs where shaky and was admitted to hospital and the following no feeling at all. He has no independence. Due to this he can not come home and the fact that there is blood in his stool and not just a little bit that does not seem to be going away.

We also live 2 hours from where he is being treated and might not be able to live at our home when he returns as it is really not at all suitable for a man in a wheel chair or be modified. Bathroom are just too small.

In my opinion, I feel that they have taken too long to commence anti depressants. the nurses have been asking me about him and how he is feeling for about 2 weeks now and I have been very honest with them.

He is also the odd ball who has AML (8:21) and CML (9:22) translocations as well as a sarcoma causing paralysis. The doctors don't give us expectations or prognosis as they say the are taking it day by day and they know how to treat each individual aspect of what is happening to him they are just not sure of the response to treatment since he is dealing with all 3 at the same time.

Lauren,

Are they actively treating the sarcoma? If so, has there been any improvement with the radiation? I am sure that this aspect is the most depressing and I too cannot understand what their reluctance is to start antidepressants. I think you should ask for a psychiatry consult to get the ball rolling.

Cliff

Apparently the sarcoma is a collections of blasts which resulted from his AML/CML The treatment of it appears to be the same as for AML, for which he has undergone one induction round. As I understand it, he is in the recovery stage, which is necessary before they take any further chemo actions. As I see it, his hope is in a rapid improvement in these numbers so that further treatment can take place. Since this combination is extremely rare, I would hope that they are reaching out to all who may have had experience with this particular complication -- the probability that they have seen it before is quite low -- if they have the you are quite lucky, but they should still be reaching out to the research done on this to see what may have been done recently in cases such as this. I am sure that all who read this thread are in fervent prayer for your husband. -- dave

Lauren,
You guys are really going through it, not only the combination of AML and CML but paralysis from a Sarcoma too. AML is devastating in itself but you both got hit with a triple whammy! I cannot imagine what you and your husband are going through right now. I am praying for healing for your husband and guidance for the doctors. I really depended on the MD letting me know what was going on, how I was doing and what was the plan. I do remember writing out my lists of questions for each day, I did this religiously, and it did really help. Where I was treated there was also a Clinical Nurse Specialist in Oncology and I asked to see her a lot. She was able to sit down and talk with me and further explain those things I needed. I know I also started to feel better when my counts started to rise, and I was very tearful when they were low and the side effects were at there worst. Is your husband able to be transferred to a wheel chair? Maybe with a mask on he could get out of his room for a wheel around the unit, just a change of scenery may help a bit. Also I asked for help from a Physical Therapist to help keep me moving, they have wonderful ideas. Exercises he can even do in bed with some bands. Anything that can help him feel like he can take some control of his life back. The lack of control and helplessness is one of the most difficult things I think. Hope thing turn around soon.
Take Care,
Suzanne

Thank you for your support.

He has had radiation which improved his "feeling" from his nipples to his waist and he gained some movement in his knees. This was in week 1 and 2 in hospital. Unfortunately he has since lost that feeling again which I am sure would have been hugely disappointing for him. Then week 3 and 4 were spinal injection chemo as well as ICE chemo treatment plan. He has not had any more chemo this week just past. They were hoping to give him another weeks worth but infections got too bad for him to deal with.

Before he started feeling this bad, they were sitting him up and put him in the chair once. With the bowel inflammation they are not too keen to move him around too much at the moment as he is in a huge amount of pain around this area. They did try but the extra pressure was not a good result.

Lauren,

I am heartened to hear that the radiation treatment has started to take effect. I am sure your husband can anticipate progressive neurological recovery. I forgot to mention in my last post that crying about all of this is natural, cathartic, and just plain good for the psyche. It is unrealistic to stoically take all of this at once. If you look at it completely objectively, it is still beyond horrible. Let your husband cry when he needs to. I cried plenty and never felt like a "wuss" as my son would say. What is there not to cry about? Nevertheless, do anything you can, ask for any help you can, look for any diversions that you can to take his mind off of the present to the greatest extent possible (which is hard to do) and get him to look at his improvements, albeit slow, as an example of the "slow and steady wins the race" approach to treatment. Clearly, the pace of recovery will seem glacial at first, but there will be times of more rapid improvement. Focus him on those expectations.

XO, Cliff

That was a good sign his being able to move a bit and hopefully they will be able to do more. If they can get the sarcoma under control the treatment should be fairly straightforward since it is the AML (perhaps to some lesser extent the CML) that is causing the blasts that cluster together and cause the sarcoma. So treating the AML would be the next thing to handle. Let's just pray that they can get the sarcoma under control and out of the way. -- dave