[Wobbles]

Re: Stemming the tide: Wobbles & his transplant

by Wobbles on Tue May 23, 2017 9:25 pm

Hi Colin,

Congrats on finishing your induction therapy. I can remember when my induction therapy ended and how happy I was. It was a pure click-your-heels moment of joy. I imagine you are currently involved with your pre-transplant tests. I hope these are going well. And I wish you a good harvest when you undergo the aphaeresis procedure.

Hi Hopeful,

I also wish you the best of luck with your transplant and am glad to know that my posts have been helpful. Before I decided to have my own transplant, I remember reading other people’s posts about their stem cell transplants and how this encouraged me to take a serious look at having a stem cell transplant of my own.

---

I have some news about my current status. First, I no longer have symptoms from my C. diff. intestinal infection. I don’t know whether I am actually cured, but at least I can say that I no longer suffer at that end of things. Yeah!

Second, I had a series of extensive blood tests taken last Friday. I only got the results today as we had a long weekend in Canada with Monday being a holiday. The results were quite poor. My neutrophils have dropped to 0.2 g/L (normal range being 2 to 4 g/L). My low neutrophil level may explain why I’ve been having low grade fevers these past few weeks.

Also, my hemoglobin level has dropped to 104 g/L (normal range is 135 to 160 g/L). The pre­vious month it was at 120 g/L. I have to admit that I’ve been more tired these past few weeks.

Lastly (and quite disturbing for me), my monoclonal proteins have jumped from being un­de­tect­able (except through immunofixation) to 14.3 g/L (1.43 g/dL). The “normal” is zero, of course. I am sup­posing this means that my stem cell plant has failed. As I have not yet talked with the hematolo­gists look­ing after me, I am not sure what my next step will be. I need to get over my deep disap­point­ment and try to get my mindset thinking more positively. I imagine that I will be given the option of being put back onto an aggressive treatment regimen. I am not giving up.

I don’t regret having my stem cell transplant. I still believe I made the best choice. It is just bad luck.

I’ve included a graph of my monoclonal proteins. It tells the story.

2017-05-19 Monoclonal Proteins.png (10.94 KiB) Viewed 1282 times

[WholeNotherWorld]

Re: Stemming the tide: Wobbles & his transplant

by WholeNotherWorld on Wed May 24, 2017 10:10 am

Oh nooooo! I can only imagine how disappointing this is. I hope your doctors have a good plan B. In spite of your struggles, please know that the gift you are giving this community by posting your progress is huge. We are following closely and hope the next round of treatment will be more effective. You are due for some good luck!

[Hopeful1]

Re: Stemming the tide: Wobbles & his transplant

by Hopeful1 on Thu May 25, 2017 12:45 am

Gracious! That is not news one wants to hear after the progress, pain, and procedures you have endured! My heart aches with disappointment for you! Do your best to hold positive, I sure hope your doctors will have a new plan for an attack. Prayer for strength, courage, and a successful plan of action. Big hug to you.

[kap12]

Re: Stemming the tide: Wobbles & his transplant

by kap12 on Thu May 25, 2017 2:55 am

So very sorry to hear this, Joe! How difficult it must be for you to share your most recent test results. It is understandable that you would feel deep disappointment. I am sure that many of us who follow your posts share in feeling very disappointed for you. What a year you have been through! It is good to know that you have such a strong, resilient spirit. It appears to have served you well through your treatments and the transplant, and I suspect it shall continue to do so. Always holding a good thought for you, Kristine

[Colin]

Re: Stemming the tide: Wobbles & his transplant

by Colin on Thu May 25, 2017 12:50 pm

I am so sorry to hear that your blood tests have given you some disappointing news.

Hopefully your oncologist and team will get on this very quickly. You should at least be en­couraged by how you managed to get the M-protein down to an undetectable level on the pre­vious treatment. We are all behind you and rooting for you to achieve a complete response or something that is easily managed with maintenance therapy.

I had my apheresis consultation yesterday at VGH. The nurse and physician were very pleasant and helpful. My pre-testing starts on Monday and continues on Wednesday at Nanaimo General Regional Hospital. Will move over to Vancouver for my first Neupogen injection on June 2. Maybe we will have a chance to run into one another.

I know you will continue to face things head on and strong. Things have got to turn around for you, I believe that.

Colin

[Hummingbird]

Re: Stemming the tide: Wobbles & his transplant

by Hummingbird on Mon May 29, 2017 2:14 am

Hi Joe,

Just want to add my best wishes for your next run at the numbers. I appreciate your generosity in sharing and encouraging everyone here. Hope you can take in all of our prayers and thoughts for healing, inside and out.

[Colin]

Re: Stemming the tide: Wobbles & his transplant

by Colin on Sat Jun 17, 2017 2:48 pm

Hi Joe,

I just wanted to thank you again for all your posts in this thread, "Stemming the tide". I just completed the melphalan on Thursday and the stem cell transplant yesterday (Friday, June 16). All went very smoothly with no ill effects so far. Today is Day +1 and I went for a 5 km (3.1 mile) walk.

Thanks to you I was able to recognize the mileposts and anticipate the potential events. I know the tough times are just around the corner, but I have confidence in making it through. Of course I am still a bit anxious, but you have really helped me and I want to thank you for that. I also give thanks to the many others who have so generously shared their experiences here on the Beacon as well.

[Hopeful1]

Re: Stemming the tide: Wobbles & his transplant

by Hopeful1 on Mon Jun 19, 2017 7:02 am

Thank you Colin for posting. Glad to hear the beginning of your journey is smooth. Positive energy and light sent for smooth run all the way thru. I followed Joe (too) and was saddened by his results as he hit his 100+ days. I begin my tests for auto transplant this week, I know I must and will do this, I am still very frightened. Guess it is very normal to have these reservations. High risk for relapse places me on the transplant "sooner the better" team. I hope you will post your journey, I will follow it (if I may). It is so helpful and encouraging. Godspeed on this journey! Prayer, strength and continued healing sent your way. Funny how we bond in this site, it is such a blessing to have found it and to be a part of it.

Joe, I hope you are doing well. Would love to hear from you!

[Wobbles]

Re: Stemming the tide: Wobbles & his transplant

by Wobbles on Mon Jun 19, 2017 8:46 pm

Hi,

It is time for me to update my story about my myeloma treatment.

The first thing to mention is that I’ve developed severe back pain, which one of my hematologists believes is related to the resurgence of my kappa IgA myeloma. I am currently on hydro­mor­phone pain killers. I am still adjusting dosages to see what works best. The back pain started about 10 days ago. I am having a lot of troubles with it. The pain is disabling.

Regarding treatment for my myeloma, I will start tomorrow my first round of CyBorD (cyclo­phos­phamide, Velcade, and dexa­metha­sone). The first five week round of treatment will be at Vancouver General Hospital, which is where I received my transplant. All subsequent treatments will be done at St. Paul’s hospital, which is where I was being treated prior to my transplant. (As Colin Rice is just undergoing his transplant at VGH, I will keep an eye out for him.)

My recent blood work shows that my monoclonal proteins continue to rise very sharply and that my kappa-lambda ratio has soared to 140. This ratio should be in the range of 0.26 to 1.65. My kappa IgA myeloma is currently very active.

Both my red blood cell counts and platelets are dropping quickly, and two weeks ago my neutro­phils dropped to 0.1 per nanoliter (normal is between 2 and 8 per nanoliter.) I developed several low grade fevers during the time my neutrophils were especially low.

My hematologist and I are hoping that my CyBorD treatment will knock down the number of cancerous plasma cells in my bone marrow and thereby lessen my backache. Oh, I forgot to mention that plasma cells are now populating my peripheral blood system. These are being routinely found on smear tests. Also, I have developed a serious amounts of rouleaux. In this context, a rouleau is a stack of red blood cells. These can form if there is too much protein in the blood. In my case I have too many monoclonal proteins.

I wish it was a better story, believe me.

Joe

P.S. - I just saw that Colin has posted. I am so glad to see that things are on the right track for you. Hope to meet up.

[Ian]

Re: Stemming the tide: Wobbles & his transplant

by Ian on Tue Jun 20, 2017 2:34 am

Hi Joe,

Like many of us here, I've been following your updates and appreciating them a lot. I'm therefore very sorry to hear that you are relapsing.

If I recall correctly, you were treated with CyBorD after your diagnosis and before your trans­plant. So it sounds like your doctors are trying the same treatment regimen again before moving on to another treatment option. That makes a lot of sense.

You should know, though, that there are lots of other treatment options if the CyBorD doesn't work, or if it doesn't work for very long. For example, you haven't yet been treated with Revlimid, one of the most common myeloma therapies, and your doctors may be thinking of combining Revlimid with Kyprolis and dexamethasone as a backup to CyBorD. Or they might combine Revlimid with Empliciti and dex as your post-CyBorD treatment, and leave Kyprolis as an option to use sometime later.

In any case, best of luck with your treatment, and thanks again for your updates.